# Moving on to Humira



## Clash

Thought I would go ahead and start the new thread for the new drug.

I've realized I truly suck at remembering the specifics of nurse calls and Dr. appts.

From my last thread you may remember the nurse called late evening and stated high antibodies to remicade starting humira and that she'd call the next day. To be prepared I had a notebook to take notes in for that call. Apparently, notes aren't my strong point, she gave a lot of info and this is what I have as notes:

px encompass rx

4 shots

2 week

2 weeks(yes, I have it written once singular and once plural)

Ambassador program

px en

Humira(with an arrow under it)

fax#

(and at the very bottom I have written) plates, cups bowls (and a huge bold check mark)

WTH! Anybody ever seen this level of dysfunction in notes taking? I think I intended to use keywords then go back right after the call and fill in notes. Obviously, that didn't happen!


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## xmdmom

Well it sounds like there was a lot of information to take in. I think the medical team should always put important info in writing.  It's definitely hard to engage in a conversation and take notes at the same time.


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## Clash

We have an online portal so technically I could all the info there(through messages if I chose it over phone calls) and they do update appts with the important bullets of each appt with Dr. but not phone calls.

This was just me pointing out that note taking is not my forte! Ha!


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## crohnsinct

OMGosh Clash!  You have me literally LOL!  I agree with xmdmom...how on earth should you be expected to process all that info and take notes at the same time. 

Have to admit, I am curious as to the role cups, plate and bowls play in Crohns disease management:rof:


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## my little penguin

Sorry about the notes
My take 
Two loading doses 
Week zero -4 doses
Week two -two doses
Then every two weeks after that

Of course check with your Gi to be sure


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## Clash

Maybe it was an exercise in food display to help IBD kids consume more calories! LOL 


Who knows but whatever it was I didn't get them together so somewhere something or someone is lacking cups, plates and bowls!


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## Clash

I'm not worried about it guys, the humira ambassador is supposed to go over everything when she visits. I just thought my note taking was hilarious!


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## Maya142

You made my spit out the coffee I was drinking Clash! So hilarious. M did the same loading doses.
No idea where the plates and bowls come in?!!


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## Clash

Maya142, that is exactly what I did when I picked it up and read over it. Like where was my brain as I was writing this!


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## Pilgrim

That was hilarious!

I always get annoyed when the doctor calls without an appointment (with me!). Um Hullo! You are telling me this shocking, serious medical information unannounced and I am supposed to comprehend and take notes with a highlighter marker (all I can find) while a two year old feeds me playdough, and the 4 year old is singing the highlights from "Frozen" standing on an ottoman with a large wooden block as a microphone. 

But the plates, cups, bowls???!!! OMGoodness, that is hilarious. It's like you got bored while he was talking to you. I think this one is going to haunt you in forum history.


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## crohnsinct

^:lol2::ylol::rof:


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## Clash

LMAO, Pilgrim! I have been wracking my brain for the cups, bowls, plates...like some poor kid and his birthday party guests had to eat their fare right out of the box or a ladies luncheon was hastily turned from bring your on dish to finger food extravaganza! Sheesh!


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## Tesscorm

LMAO Clash!!!  Read your post yesterday (but couldn't reply) and it's been giving me a smile since!   And, MLP - have you ever considered being a code breaker?  :lol:  Clash can check with her GI but I'm betting you're right!  

Plates, cups, bowls...   Perhaps you were looking at your cabinets and thinking you'd reorganize?!   :rof:


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## Clash

Definitely took better notes with the Humira Ambassador program lady. But, I still managed to screw things up.

Ambassador went over what she was mailing me, injection practice thingy, humira pamphlet blah blah blah then handed me over to pharmacy solutions to handle patient benefit care stuff. They took all the info and then needed something about the px. So called the GI nurse and she said they've already sent it through encompass rx. I don't know, what is what so I'm hoping the humira thing is just help to get certified and not some filing process. Also if my px ins is Caremark how can Dr. use Encompass rx? Remicade seemed such an easier process.

Oh and completely forgot to have C run by and get a tb test so he'll have to do it on the way to work Monday.

Hoping all this is worked out quickly.


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## Pilgrim

They definitely want to get the money thing sorted out, big bucks med, so I imagine if they have something screwed up they will be in touch. 

That said, we have a coordinator with Humira who is very approachable with all questions and is good about answering phone calls and emails. If you are worried - just get in touch so it doesn't "take up your air". (That's something my husband says when he's annoyed, cracks me up, but you know what I mean - who needs more on the mental list?)


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## apl2018

Hey Clash you may like my blog. I got diagnosed crohns aged 17, im a 25 yr old guy, medical student in VA and new ostomate! I am making this blog check it out hopefully there will be something in there you can relate to. (I wish I had someone when I was a kid honestly that is a motivator for me)


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## Clash

So still waiting.... The tb test was faxed back to the GI office Thursday so I'm thinking I will hear something this week.

On the Humira Ambassador side we have received the package with the Humira safety info, schedule keeper, symptom tracker blah blah blah... oh and the Sharps container.

My only panic area right now is the whole antibodies/reaction worry. With remicade, he was in lab surrounded by medicos with Humira it's just us. I'm just worried about a severe reaction.

Otherwise, all is well!


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## my little penguin

Due to DS reaction to remicade our Gi wanted us to do his first dose in the clinic.
The funny ( or not so funny part ) clinic nurse only thought it was a train mom how to give an injection session ( not necessary since it's the same as Mtx).
Her eyes went buggy when I explained why and she basically told me there wasn't anything else she could do there than I could do at home .
I didn't have the heart to tell her the allergy clinic  was next door on the same floor I would be running there first regardless ( after I gave the auvi-q of course  )

No issues for DS except a injection site reaction when I used the back of the arm twice 
Legs no issues 
We now just give Zyrtec prior ( he was taking it daily anyways )
Good luck


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## Sascot

Good luck, hope it goes well and works great for him!


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## Maya142

We also did the first dose at her doctor's office so they could teach us how to use it and watch for a reaction. By then, I knew how to give a shot, but M wanted to learn how to use the pen and she wanted a nurse to teach her lol: she didn't trust me!).

It's worth asking if you can do the first dose in a doctor's office - particularly if he's having 4 shots at once. They made us come in a second time when M went back on Humira last year because she had never done the loading dose before.


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## Clash

Right now it's set up for a nurse to come to the house for the training and first loading dose. I plan on discussing my concerns with the GI nurse but it will probably be a hard sell to C to get him to drive to the GI(2.5 hrs) just to allay my fears. I might could talk him into the GP but would that be any better?


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## Maya142

We went to the pediatrician when my older daughter was put on Humira. It made me feel more comfortable -- I figured if she had some sort of reaction they would know how to deal with it. 
Whatever you decide, hope the shots go smoothly :ghug:


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## Maya142

Did he choose the pen or the syringe Clash? I keep meaning to ask.


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## Clash

The GI nurse has talked him into the pen. She told him he'd still have the option of the syringe if he couldn't handle the pen. We're supposed to be getting a training kit with a pen to practice with but it didn't come in this kit I just received.


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## my little penguin

Just an FYI
Most GP offices are not equipped to handle allergic reactions at all.
My gp had a landscaper ( not a patient) rush in from across the street since he was reacting to a bee sting ( he didn't have his epi on him).
My gp said it was bad -they didn't have the equipment or meds there to handle it so they could only give 9-1-1 a call .

When DS gets allergy shots -he is only able to get them at the peds office 
If we bring his own auvi-q
They do not have it on hand


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## Clash

Yeah that was what I was thinking. I guess I'll just go over my concerns with the GI nurse and see what she comes up with. I wouldn't be adverse to having it done at our local hospital just for my peace of mind but I know C would absolutely balk at that!


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## CarolinAlaska

Some GPs do have what is needed to do allergy shots.


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## Clash

I'm going to call the GP but highly doubt they are equipped. I do remember they didn't allow C to have his allergy shots there when were considering them and the travel to the allergist was quite far, but not sure how that relates.


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## Maya142

You know, bribery may work to get C to his GI's office


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## kimmidwife

Clash that is funny about the plates and cups!
We had the same issue when we tried cimzia. Had to do it at the Gi office but then when she had an allergic reaction they didn't do anything. I ended up giving her Benadryl.


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## Farmwife

Hugs, I hope Humira works for him.:hug:


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## Clash

Okay, kimmidwife, if I drive more than two hours and they don't do anything if he has a reaction, they'll be seeing me have a reaction as well! LOL!


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## CarolinAlaska

Clash said:


> I'm going to call the GP but highly doubt they are equipped. I do remember they didn't allow C to have his allergy shots there when were considering them and the travel to the allergist was quite far, but not sure how that relates.


Probably relates a lot.


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## Clash

The humira should be here soon. The pharmacy should have the px tomorrow and I already have the my humira card info(the card is in the mail)

Quick question: C has woken twice in the last week and the left side of his bottom lip is swollen. He can feel that is is swollen, their are no cuts or sores in the area. He hasn't bumped it or anything. He says he can feel when the swelling goes down but even after he says that it still looks puffy to me.

Is this a thing the GI should be aware of, I mean how could it relate to something he needs to know? I'm not sure what the GP would say other than virus or uti(his answer for everything) what other doc would this fall under?


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## my little penguin

Allergy or hereditary angiodema ???
Any extra swelling automatic call to allergist ...
Let us know what the doc says 
Also call Gi as an FYI


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## Clash

MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.

Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.


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## my little penguin

Even if he hasn't had swelling before 
Call his allergist
Same thing you would do for any Gi symptoms
Swelling of lips can go bad without warning
Good luck


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## my little penguin

> Other health conditions
> Other illnesses that can cause swollen lips include:
> 
> Cold sores: the herpes simplex virus can trigger cold sores and blisters that can become red, swollen and sore. The blisters may break open, leak a clear fluid and then scab over after a few days. They usually heal after several days to 2 weeks.
> Cheilitis: a rare inflammatory disorder of the lower lip.
> Cheilitis granulomatosa: a rare inflammatory disorder that affects young adults.
> Melkersson-Rosenthal syndrome: a rare neurological disorder.
> Lip cancer associated with excess exposure to sunlight.
> Inflammatory bowel disease (Crohn’s disease, ulcerative colitis) can cause swelling of the lips.


From
http://www.m.webmd.boots.com/a-to-z-guides/swollen-lips?page=3

So definitely allergy and Gi


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## Maya142

:lol: don't trust Dr Google! Hope the Humira goes well.


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## Pilgrim

Clash said:


> MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.
> 
> Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.


It's probably the cup he's using! He needs more cups.


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## Clash

Bwahahaha!


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## Tesscorm

Just catching up on this  

Good luck with the shot!  I hope all goes smoothly!

I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else...  It certainly won't hurt to have it on hand.

With humira, is it likely that if a reaction is to happen, it will be during the loading doses?


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## Sascot

Good luck for the Humira!


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## Pilgrim

Tesscorm said:


> Just catching up on this
> 
> Good luck with the shot!  I hope all goes smoothly!
> 
> I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else...  It certainly won't hurt to have it on hand.
> 
> With humira, is it likely that if a reaction is to happen, it will be during the loading doses?


What I was told by the specialty pharmacy was that you would usually see a reaction within 24-48 hours after the first or even the second set of loading doses. She told me that if you can get through those - you are usually in the clear. I assume this means "in the clear" for the shorter term possible effects.


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## crohnsinct

Heck!  I say call the fire department and National Guard to!  Can't be too careful...safety first

Tell that lip to fall into step!  No glitches days before first shot!


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## Clash

Ok, I'm fairly close to complete explosion...

The GI office uses a certain specialty pharmacy. I explained that it wouldn't be the one my insurance uses since ours is just one. Still everything got sent to their pharmacy.

So, GI pharmacy calls two days ago and says we had to transfer everything to the specialty pharmacy your insurance uses...um duh. They told me to call that pharmacy.
For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.

So, it has been 4 weeks since we first discovered C was moving to Humira, 1 week delay due to my own idiocy of forgetting to send C to get his tb test, another week delay because the GI never got the results from GP for tb. And overall delay because they went through the wrong pharmacy.

Maybe the cups, plates and bowls were to throw at the wall to release stress?! 

C didn't not have a swollen this morning. He was to start the benedryl when he got off work. I left it out for him and texted him and left a not on the counter(I was asleep when he got in) yet he didn't take it.

Yeah it may take more than throwing dinnerware to work out the stress.


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## northwesterner

Clash said:


> For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.


Typically, for a patient starting Humira/Cimizia, the doctor has to write two prescriptions. One is for the loading dose, as it needs to be dispensed all at once. The second is for the refills at the maintenance dose. I'm pretty sure the doctor can't write both of these on one script. Sounds like they only received the first prescription.


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## Tesscorm

Ugghh, Clash!!!  That is so frustrating!  You'd think these people deal with these issues all the time and would know how to best resolve them!  Really hope it gets worked out soon!

And C forgetting the benedryl...  So nice to know S is not the only one who forgets any and everything (and then conveniently forgets that he forgot and happily gets on with life)!!!     (But, glad he didn't have a swollen lip!)

Perhaps a steady supply of plates, bowls and cups is not a bad idea!  :lol:

Hugs...  hope you can get all resolved by today or Tuesday! :ghug:


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## Clash

Hopefully, it will be straightened out by Monday. I just wish it would've all gone sooner because I know in C's head it is just this ongoing hassle that adds to the teen mentality of whatev, w or w/o I'm great. Teenage invincibility...ahhh the joy.


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## DustyKat

They say life wasn’t meant to be easy but sheesh it shouldn’t be so fecking hard either! 

I hope it will be all straightened out by Monday too Clash! :ghug: And all goes wonderfully well with the Humira. Sending tons of luck your way…:goodluck: 

Dusty. xxx


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## Chester31

So frustrating! Really hope it gets sorted soon. I will be following your updates as J is moving from 6mp (only managed 3 weeks!) to Humira in the next couple of weeks.


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## kimmidwife

Is he getting the humira today?
Good luck!


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## Clash

No, today was the day I was thinking they would call with shipment date but no phone call.


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## kimmidwife

Oh we had a hard time with the specialty pharmacy as well.


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## Clash

The pharmacy called and said the starter kit was sent to the GI office per GI. This is odd because I asked the GI nurse about doing it there due to C's reaction(although it was probably due to antibodies) and the GI said there shouldn't be an issue, now this. I have a call into GI now.


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## Tesscorm

I hope it was settled today!  :ghug:


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## Clash

Yep, it's settled. Starter kit hadn't been sent to GI, GI nurse straightened it out and kit is on its way. Nurse is coming Sunday to do the first loading doses.


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## Tesscorm

Great to hear!  Bet you can't wait for Sunday and actually see it done and over!

Lots of wishes that all goes well!


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## Maya142

Fingers crossed that it will all go smoothly :ghug:

Just a head's up, M was very tired the day after the loading dose (4 shots for her too). I think she missed school. She wasn't tired at all once we got to the maintenance dose, I think it was just the four shots at the same time.


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## Clash

Its weird, I'm ready and not so ready. I know once things are established I'll be fine but just the thought of here we go again, "let this be the one" blah blah blah wears me down.


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## Pilgrim

Yes, that roller coaster of hope is exhausting.

I second what Maya said. Loading doses seemed really exhausting and stressful. But I was surprised at how easy it was when we got to maintenance. 

Hope you end up wondering why you were worried!


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## Maya142

Soon it'll be as easy as Remicade! Easier, in some ways! Hope it's his miracle drug!!


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## Clash

He is working every evening after school except Tuesday and never works on Sunday. He is doing mtx injections on Tuesdays so we chose Sunday for Humira.

I be tried to inform him he may be tired but you know teens!


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## my little penguin

Good luck


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## kimmidwife

Glad he will finally get it on Sunday. Hopefully all goes smoothly and it will be his miracle. I know exactly what you mean about the hope being exhausting!


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## DustyKat

Sending much luck and fingers crossed that all goes well on Sunday! :goodluck:

Onwards and Upwards! 

Dusty. xxx


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## crohnsinct

Oh man Clash!  Who could blame you for feeling this way.  Look at all you have been through and every time all the hope and waiting etc.  :hug:

Praying this is it for him!


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## Tesscorm

Yes, can certainly understand.  It is wearing when there's a constant worry/question...  even when it's not a 'major' worry, just constantly having that nagging worry wears you down.  I hope this is the last time you have to go through the 'new med' for a long, long time! :ghug:  

And that you're soon enjoying a cool glass of wine, on a sunny, warm patio (the thing of my dreams!!) without a single worry!! :hug: :hug:


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## Chester31

Hope all goes well today.


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## Clash

Well that was kinda horrible to watch!

The nurse did the first shot, I could tell it was painful. He gave him self the other three.

He did well but I'm glad that is over with, now to two Sunday after next then on to one every other Sunday.


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## DustyKat

*Hugs* Clash. :hug: 

Well done C for pushing through the pain and doing the shots yourself! :medal1: 

I hope Humira works wonderfully well for your lad Clash and roll on every other Sunday! 

Dusty. xxx


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## Maya142

Way to go C:dusty:! Hopefully, it'll get easier. The first loading dose was by far the hardest for M (she said after that, just injecting one shot was not so bad).


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## Clash

He didn't have much to say about it and I didn't push.

The nurse said she covered the northern half of our state as the pediatric humira training nurse. When we explained the drive we were making for remicade she was surprised. She said she had several pediatric remicade home health nurses in her office and wondered why we weren't offered at home infusions.


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## Jmrogers4

Glad it's over today.  I was thinking of you guys this morning. Hope it works wonders


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## lenny

I really hope it works!


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## Tesscorm

Glad it went relatively well but hugs to you...  heartbreaking to see your child go through something tough/painful. :ghug:  Am hoping this works for him and that future shots get easier.

Did you ever ask about having lidocaine added?  Just to lessen the pain?

Anyway, just glad it's over too! :ghug:


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## Sascot

Hope it works well!


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## Clash

Tesscorm he's not having the syringe shot he is using the injector pen so can't add lidocaine. He waffles on which type but in the end chose the injector pen.

Not sure how Humira affected him since the night before he stayed over at friends and they stayed up real late. So not sure if the shots or the night before activities had him sleeping yesterday.


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## kimmidwife

Glad to hear it went well yesterday!
They don't allow home infusions of remicade from what we were told due to the high incidence of reactions to the meds. That is probably why they weren't offered.
Will be praying that it works great for him!


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## Clash

Kimmidwife, this home health nurse was pediatric, her co-workers too. She just does the humira training but the remicade home health nurses do the infusions for pediatric patients in their home. She said she found that most are located in the larger city. She also mentioned that they carry more equipment to appts like epi pens and such. So it is an option for pediatric patients as that is all this home healthcare agency dealt with.


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## Pilgrim

Glad he got through it Clash. I don't know if it happens to everyone, but H has an immediate space-out after the injection. Like she got hit on the head with a hammer. We ran into her doctor and the tears were wet on her face still - he asked, "Did you just get your shot" She said, "No". It's like a little mini amnesia. One time she couldn't remember her last name right after. If that happens to your son at all it may be why he wasn't into talking right after the injections. 

LOL, nothing stops the social life of a teen. I'm thinking sleeping all day could be pretty normal (we have teen boys, too).

I hope he feels progressively better and that it works for a good long while.


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## Maya142

M wouldn't talk either but that's her reaction to pain - she goes inwards.

If we were to do Humira again, I would definitely explore the syringe and lidocaine option even though M is 18. Her rheumatologist always calls Humira "an absolutely brutal shot." The health center in most colleges will do the shots for them if they don't want to.

Hope Humira starts working its magic SOON!


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## Clash

The thing I do like about the pens is that they are ready to go. I wonder with preparing the syringe if it might lead to less compliance away at college.

It's almost like anything that takes time or process is way more than C is willing to do on a regular basis. I think the preparation of formula/pump/refill formula bag/time consumption is why C won't go back to ng feeds. Ha if he only knew the monotonous, time consuming tasks, he will face once he out on his own in everyday life! But, honestly, its like  his mentality is I don't want to slow down to do that.


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## Tesscorm

S is EXACTLY the same way.  Very frustrating sometimes!  When C goes away to school, don't even waste your breath explaining about separating the colours from the whites...  S just throws everything in the same load!  :lol:  And, then, rolls his eyes at me and says _'my _laundry always turns out fine'...  :yfaint:

  ---(from my other thread) I convinced S to skip that afternoon class before his scope but, I think what convinced him was that, if he attended the class, he'd have to start the prep on his own...  I think it was right about then that he said, 'uh, yeah, I'll just come home and do the prep' (translation - 'I'll come home so you can just hand me the glass and tell me what, when to drink'  

Oh well, I guess it's fair...  I always remind myself he (all our kids) have to deal with lots of stuff others don't so...  maybe they deserve the odd free card.


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## crohnsinct

Tesscorm said:


> S is EXACTLY the same way.  Very frustrating sometimes!  When C goes away to school, don't even waste your breath explaining about separating the colours from the whites...  S just throws everything in the same load!  :lol:  And, then, rolls his eyes at me and says _'my _laundry always turns out fine'...  :yfaint:


I have heard about people who separate their laundry...I thought they were a myth!  So there is something to that rule?  I honestly only do it if I am using bleach. 

I am the exact same way as C and S...too many steps and I will bail!  :drink:


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## Tesscorm

Must keep things quick and easy for hubby! :rof:


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## Maya142

Clash - a nurse at the health center would be able to mix the lidocaine and Humira. We actually explored that for my older daughter but she ultimately decided that she didn't want to see the needle and would rather deal with the pain.

At her college, if Humira is being shipped to the health center, the nurses there actually HAVE to administer the shot (I think it's a liability thing?). It took a LOT of arguing plus several notes from her rheumatologist saying that she could do it by herself. Since it has to  be kept cold, we didn't want it to go to the student mailroom because who knows how long it would take them to process it.

My daughter definitely does not separate her whites and colors -- not just a boy thing :lol:!


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## Pilgrim

Does Lidocaine have any known side effects?


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## my little penguin

Not that I know DS has used lidocaine for over a year with humira 
The difference in pain from injections was dramatic 
No issues to date


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## SupportiveMom

Onto Humira... Sorry he built up the antibodies. Good plan to have someone with him in case he had an allergic reaction. D did her Humira booster at the hospital clinic which gave us peace of mind given her reactions. I am glad the pens are working out. We went with the syringe, but after using the pens with the Simponi, I get how much easier they are if our kid is administering the drug. Crossing fingers things work well on Humira!


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## Clash

So the GI has upped C's mtx to 20mg equivalent in shot form. So .8 or .08 ml I can never remember. Today was the first dose. This is in response to his wrist pain. We are fairly positive it is his JSpA. His new rheumatologist appt. isn't until April but we are trying hard to get him in sooner.


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## Maya142

Clash, if you do get in to see the rheumatologist soon, you could ask about a steroid shot. M had horrible knee pain when she was diagnosed and her knee was very swollen. They aspirated it and injected it with a steroid and she was free of knee pain for more than a year!

 It's not something they will do often (she's never had another steroid shot in her knee for example) but when joints are very bad, rheumatologists often inject them. She didn't have to be sedated for the injection and it wasn't too bad, even though she was 13 then.

I hope the MTX works wonders and the Humira kicks in soon.


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## Clash

Thanks! I'll ask about if we ever get there! I'm hoping the humira will kick in soon for it!


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## Clash

So C spent the night off last night and got home before we awoke. I noticed his shots for today had been used so I woke him up to ask about. He said I went ahead and popped the shots and I took pics just in case you thought I was trying to pull one over on you! Bwahaha!

So loading dose two done and on to maintenance.


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## Maya142

:rof: he took pictures!! 

Way to go C for doing them all by himself! That's impressive, especially on the second dose!


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## crohnsinct

What a good boy and a hysterical post. 

A) He not only left the shots there all used up but took pictures
                                                and 
B) You woke him up to ask him about it!  HAHAHAHA  Couldn't wait until he woke up on his own.  Had to know right then and there!  That is SO something I would do!


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## Clash

Haha yep bit of evil genius on my part since he IS a teenager and probably up to teen antics on a night away I feel it is my duty to roust him out of bed bright and early!


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## lenny

He probably wanted to get it over with, poor kid.  Brave kid, though!


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## Farmwife

No, no, no! C doesn't deserve all the praise.....



 it's his mother that taught him to take a picture,
 so he'd have proof that he did the shot!!!:ylol:

That takes years of training. Good for you mom.


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## Maya142

I think C knows his mom a little too well 
Of course now that he's set a precedent, you can demand pictures of him doing his shots when he's away at college!


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## kimmidwife

That is awesome Clash!!! I love it!!!! Took pictures that is so funny!!!


----------



## Tesscorm

Funny!    And so great that he took so much responsibility for it!


----------



## Clash

C had his new rheumatologist appt yesterday. There were lots of blood tests and several xrays.

C has been doing well since the last flare of his wrist.

The doc was concerned about C's fingers as she said there seems to be fluid, one especially.

She wants to move humira to weekly, up his mtx, speak with the GI about adding meloxicam or celebrex. She wants to do these by steps and not all at once.

She said she has only one other IBD patient where the wrists and fingers were involved. The rest of hers have been back/ SI joints down when it's ibd related arthropathy.

It's a lot to take in and process but I'll get there slowly but surely.


----------



## crohnsinct

Clash said:


> It's a lot to take in and process but I'll get there slowly but surely.


I can imagine!  But if anyone can do it, it is you!  Sounds like the appointment was good though and that you found a doc who has a good handle on things. Fingers crossed that her suggestions work well for him!


----------



## kimmidwife

Wow tHat is a pretty aggressive approach. I am glad it is step by step though. I guess you will see how it goes one by one. Keep us posted. Fingers crossed that he will only need one change and be better!


----------



## my little penguin

Hugs btdt with Ds
The higher frequency really helped dS
In terms of his joints in his hands 
It is a lot at once but realize it can work


----------



## Clash

my little penguin did they call DS's joint pain in his hands something different? This doc said she doesn't get bogged down in naming systems and arthropathy especially pediatric and when IBD is present. She did say at one point she would consider back/SI joints down JSpA but his hands might be considered polyarticular(or a similar word to that).

Oh and if all else fails she may consider a low dose pred burst. C cringed when she mentioned pred so she said she'd shelve it til necessary.


----------



## kimmidwife

Clash,
Let him know a low dose pred burst is not bad at all. Much less side effects when you are only on it for that short time.


----------



## Clash

I think that is just his initial reaction to pred. He'll do it if it's needed.

In fact, I think he feels like he isn't having much joint pain so why all these med changes. I forgot she px'ed physical therapy too. It starts with range of motion and endurance but she wants him to work up to strength training, saying that strong muscles help to hold joints and take work off them or something.

Also, food for thought, she mentioned 3 studies that have shown minor damage reversal with humira(or maybe just biologics, can't remember how she worded it)


----------



## Farmwife

Grace has that kind, Clash.
Polyarutclar means more than 5 joints involved. 
Her Rheumy also doesn't get involved in names but believes Grace is heading towards AS. 

As to the treatment, that's also Grace's path.
 It's aggressive but needed to try to slow the disease. 
Grace already has done 2 low dose pred rounds. 
Tell your son they were nothing worry about. 
Of course Grace is little and her dose was 5.
 Another possibility might be sulfasalazine in low doses.
 It's helped Grace and now were backing off of it but will probably be adding something else.


----------



## Clash

She said he was tested for HLA B27 while in the hospital in 2013 and it was negative.

These are the tests she did:
ANA screen with ds DNA Profile
CRP
Stool fecal calprotectin
CBC-diff
CMP
Cyclic citrullinated peptide Ab
ESR
Rheumatoid factor, quantitative
Urinalysis

Imaging
Wrist min 3V BIL
Hand MIN 3V BIL
Pelvis 1 or 2 V

Possible more tests to come


----------



## my little penguin

DS offically has juvenile polyarticular spondyloarthritis associated with inflammatory bowel disease in his hands which runs independant of his GI flares
There may have been another term in there as well
Typically we just say JSpA 

He hasn't had HLA testing done since it wouldn't change treatment 

He has had tendonitis and svonitis in his fingers due to JSPA
It also affects his wrists


----------



## Tesscorm

Sorry you're facing this but it does sound like you/he has a great rheumo.  That does take a bit of the weight off, knowing she is on top of it!  But, I do wish you and C didn't have this added worry. :ghug:

I can't precisely explain the connection to muscles but I do know mucles/ligaments/tendons are causing my husband as much, if not more pain than his arthritic knee right now.  Someone else may be able to better explain it but, apparently, inflammation around the joint 'turns off' the muscles around the joint - this then weakens that muscle because it's not being used and, at the same time, puts more pressure on the joint because the muscle isn't carrying any of the workload.  This may not be exactly correct but I think it sort of/vaguely explains the muscle / joint relationship.  Also, apparently, exercise results in more of the lubrication/fluid in the joint - so while the exercise may hurt at the time, the lubrication it creates will help in the long run.

:ghug:


----------



## Maya142

M was diagnosed with juvenile spondyloarthritis (now juvenile AS). She also has fingers involved. Polyarticular generally just means more than 5 joints involved. Sometimes if it's associated with IBD it's called Enteropathic Spondyloarthritis - but honestly, the names don't really matter.

 Juvenile idiopathic polyarticular arthritis is a different category of JIA that has different treatment (and behaves more like RA than AS). They used Anti-TNFs for it but also drugs like Actemra and Orencia. I doubt that's what she meant though since C has IBD.

Aggressive treatment is actually a good idea- you certainly don't want his fingers/wrists damaged. Tell C it's like asymptomatic Crohn's - you still need to treat it! 

We have done both Mobic and Celebrex - right now M is on Mobic and S is on Celebrex. We had to try a LOT of NSAIDs before we found one M could tolerate. She takes Prevacid too because of the NSAID.

Weekly Humira made a huge difference to M- hope it will to C.
Doing the imaging is a REALLY good idea- you'll have a baseline which can tell you whether things are working or not.


----------



## Maya142

Wanted to say that erosions in M's SI joints actually got BETTER when Humira was working. I didn't even know erosions could get better - I thought they were permanent!

 Unfortunately, when Humira stopped working things went downhill again but it's good to know that these drugs can really work!


----------



## Clash

Ok between my little penguin and maya142 I think you covered what she was saying. I asked if it was JIA and she said something about that used to be JRA and she was going to check his rheumatoid factor or ANA but that she felt like and hoped we were dealing with IBD related and not JIA? I don't know, I may be way off and like you said Maya142 she was treating it not by name but by activity or something like that.


----------



## Clash

Edit: I meant that JIA used to be JRA not that is the label she gave C.


----------



## Maya142

JIA is the new term for JRA. There are 7 types of JIA - enthesitis related arthritis/juvenile spondyloarthritis is one and polyartciular JIA (which can be RF+ or RF-) is another. The reason she's checking for polyarticular JIA is that he has his hands involved which is not that common with JSpA (though honestly I can count 5 kids I know with hand involvement and JSpA).

M's had ANA and RF done when she was diagnosed - I believe both were negative. ANA became positive at some point but that can be caused by Anti-TNFs, so no one paid attention to it really. 

Honestly, since he has IBD it doesn't really matter that much because anything they put him on they will want to work for the IBD too. So I would imagine drugs like Actemra (IL-6) and Orenica (T cells) are out. Incidentally, Actemra and Orencia did horribly in trials for AS but very well in trials for RA.

The MRI's also might help - certain kinds of damage/inflammation are specific to JSpA (like enthesitis for example). I believe erosions look different in RA and AS so I would imagine they also look different in polyarticular JIA and JSpA.


----------



## Clash

Ok guys not happy here. I just hots C's lab results back from rheumatologist and C is slightly anemic. HGB was slightly low, 11.2 NNR 12.6 - can't remember 17.7 maybe. He was solidly in normal range last draw.

They have the calprotectin result back to but doc hasn't read it, nurse said she'd call back with it as well today.

I really hate Crohns!


----------



## my little penguin

Humira takes a while to kick in months 
DS labs went a little off for a while
Add in JSpA can cause anemia as well


----------



## Maya142

Humira took a really long time to work for my daughter but it did work eventually! Hang in there!
How is C feeling?


----------



## Clash

I think the most concerning is that C had not had anemia since dx and then barely. Also, that this has happened after surgery is more disconcerting as his HGB has been normal. I guess, since surgery, we have been under the assumption all is well, especially since the offending area was removed. The fact that this may imply that his CD is back active is very disheartening more so since even high dose remicade plus mtx injections were unable to completely quell his active disease before surgery.

I have to admit I truly had more faith in remicade than I have had in humira. Hopefully the FC result will give me relief from worry.


----------



## my little penguin

Hugs
DS never had anemia or low ferritin prior to dx 
Only after his arthritis started to show up ( we thought arthralgia )
The more uncontrolled the worse it got
Add in has he been on any abx 
They can cause bloodwork to be off as well even weeks afterwards


----------



## Maya142

M's low hemoglobin and low ferritin (low enough for iron infusions) have generally been attributed to her AS too. I wouldn't blame Crohn's till you get the FC back, particularly since you know his JSpA just flared.

Humira actually worked better than Remicade for my girls, however, it did take much longer to kick in. And high dose Remicade (20mg/kg) never really worked for M at all. Don't worry too much yet (easier said than done, I know)! Sending hugs.


----------



## Clash

Thanks guys! His joint imaging did look good so there is that!

I just hope she calls back today with the FC result so it won't just nag at me all evening. I put a call into GI but haven't heard back. Although, when C had surgery his FC was low, I think 300 something I'd just like a normal one!


----------



## kimmidwife

Clash sending you a hug! Sorry to hear. Fingers crossed for a good fecal calp. Is he supplementing with iron?


----------



## Clash

In the past, we couldn't find an iron that didn't severely constipate him. But that is why I have a call into the GI.


----------



## crohnsinct

I would feel the same way Clash! 

Is he on any NSAID's for arthritic pain?  Only ask because those could cause higher FC and even some ulcerations and maybe a little bleeding leading to the anemia.


----------



## Clash

Nope. That is why we were pulling the FC because the new rheumatologist wants him to start an NSAID, think there is a scope before we start NSAID too. GI appt was moved to May 13th(supposed to schedule scope then but these results might change that)


----------



## Maya142

M has never had a high FC even though she's been on an NSAID for years - highest was 486. My older daughter, who doesn't have IBD, was tested once and her FC was like 26 or 36 or something. 

So, based on our experience, NSAIDs don't always raise FC but it's smart to know what his baseline is before you put him on one.

Glad imaging looked good, that's great news!!


----------



## Tesscorm

Ugh, sending hugs too. :ghug:

My understanding is that HGB can take a long time to recover so, if it was caused by JSpA, it may simply be that his HGB hasn't had time to recover yet.  S's was at 107 (10.7??) at dx, our normal is 135-170 and it took two years for S to reach 137, and then another 1.5 years to reach 151!  The trend was always up but it just took a LONG time!  When you're comparing to his last 'good' result, how long ago was that test?

I hope you've heard from GI by now with his fc result!

Again, lots of hugs... :ghug: :ghug: :ghug:


----------



## Clash

This blood test was a little over 2 weeks ago and due to a new rheumatologist. The previous test was 4.5 -t weeks ago and just regular scheduled humira blood work. So about 2.5 weeks in between maybe.

I realized while looking back C has never had low HGB, before dx his ferritin was low but HGB was low normal. That result is why the GP initially sent us to GI, so before dx.

GI nurse called today, she is going to call rheumatologist and get fc result as well. Hope someone calls me!


----------



## Maya142

You could ask for an occult blood stool test to see if he's bleeding. That would be one way to tell if it's JSpA or Crohn's causing the anemia.

Hope you hear from the doc soon!


----------



## Clash

Hey guys just wanted to update:

Rheumatologist nurse just called and C's FC number was 59! Yay so happy! Interstingly, I asked what the stated NNR was and she said 0-120. We dropped the sample at a local labcorp(in the past their stated NNR has always been less than 50) and the results sent to rheumatologist. Just thought I'd pass that along.


----------



## Tesscorm

Whew!    That's great!

Can't remember - do you have any upcoming apptmts to ask about his HGB?  Or are you just going to wait it out a bit?


----------



## Clash

He has an upcoming GI appt in early May and I think there will be a scope dveduled then but not sure now with this FC result.


----------



## Maya142

GREAT news!! :dusty::dusty: So glad it's working!!


----------



## Catherine

Great new to working!!

Hemoglobin, do you have results for B12, and folate?


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## kimmidwife

Very gLad to hear that is super awesome!!!!


----------



## Sascot

That's great, what a good fc result!


----------



## Clash

I'm going to ask the GI to run his vitamin levels. We usually do that every 6 months and it hasn't been quite y months but I'm sure he will with the HGB being a bit low.


----------



## Pilgrim

Great news on the FC!!!! I'm too lazy to search back, what was the number before Humira?


----------



## Clash

Pilgrim he hadn't had an fc since surgery, that I remember. So not sure. His last fc before surgery was 300, I think.


----------



## Sudsy

Very amusing!  Thanks for sharing!

Pilgrim: I totally feel the same when about when doctors call and all heck is breaking loose and I'm trying to find a quiet spot and take notes (ha!  "with a highlighter"!)

Clash: Related to what Pilgrim said: Caremark used to call me fairly often and start their conversations with, "hello.  This is Caremark.  Can you please verify your daughter's name, address and DOB?" and I'd be like, "HELLO?!  Could you ask if this might possibly be a good time for me to talk with you?!"  Maybe they have gotten a clue since then (about a year ago.  Thankfully, our  Remicade nurse was able to get us off that program and now she deals with them.)


----------



## Clash

Okay guys so today is the GI appt.

Blood work 5 weeks ago showed slightly below normal HGB. Fecal cal protection was 59.

I'm going to ask for more blood work to include ferritin as well as normal labs done when using humira and mtx. Also I wanted to check vitamin levels so D, B12, and can I ask for folate as well or is that covered in one of the iron studies? 

I assume we may be discussing scopes since we are past six months outside of surgery but then again with the FC result maybe not.


----------



## Tesscorm

Not sure about your question on folate.

Hope all goes well at apptmt and you get some reassurance on his HGB...  I wonder if anything else could affect HGB...  a growth spurt??  Not suggesting this because I've heard of it, just thinking out loud... wondering if there could be a simple explanation. :ghug:


----------



## Clash

Not sure beyond his JSpA but ibfind it odd that it would affect it when his imaging and all looked so good.

I'm gonna go with growth spurt. I don't care if it's supported by scientific backing or not since it would please me in two ways. One, growth! And two not associated with active disease! Haha I like it! Thanks Tesscorm!

I'm hoping more blood work will give us direction or put it to rest.

I'll update after the appt.

Btw, 2 more weeks and C will be graduating! Oh my!


----------



## Tesscorm

Okay, may be a bit of a stretch but...  :hug:




> If infants, children, or adolescents have rapid growth spurts, they may get iron deficiency anemia.


http://bodyandhealth.canada.com/condition_info_details.asp?disease_id=274


----------



## Maya142

When you say scans Clash, do you mean x-rays or MRI's?
In very early JSpA, even MRI's can be clean though often they will show inflammation (bone marrow edema, enthesitis). 

Hope his appt goes well!


----------



## Clash

Xrays then MRIs, she said both looked good, but didn't iterate exactly what they showed. By the time we had them he wasn't having any joint pain though. And none now either.

So height hasn't changed so ....

Waiting on GI now.


----------



## Clash

At lab getting CBC with diff, comp. Metabolic panel, CRP, ferritin serum, iron TIBC, prealbumin, reticulocyte count, SED, b12, folate, D, zinc

Office should call to schedule scope.


----------



## Clash

Well, C graduated with honors this past Friday night! We finally have gotten to the end of that journey. I swear chronic illness and our education system are almost incompatible! I'm so glad we decided to move to a flex school. There was a lot of independent study but still the benefit of structure of the classroom for in service days. It was truly awesome to watch him walk across the stage and into a new chapter in his life.

This Friday is scope day. Life with CD, each accomplishment is topped off with prep! Haha! We'll being going up the day before to stay at a hotel for prep since scope is at 7am. 

C's job is going great and he'll be starting college in the fall. We've decided he will stay local. Universities in our state require freshman to live on campus and neither of my kids relished this idea. So, first two years local then last two at a University. C will live at home the first year then he and some friends will live together the second year. Local also allows him to keep his job which is the main reason he chose to stay.

Hopefully, the scope will go well and we'll just keep cruising along. Oh and he still isn't pleased with humira. He says the shots haven't gotten any less painful. He says it's not a big thing, he isn't destroyed by it but he does dread shot day. He didn't realize how good he had it with remicade where he was only reminded, in a non painful way(haha) of his CD every 6 weeks instead of the jarringly painful reminder of CD with humira every other week. 

C has picked a few different directions to go with academic interests. He has chosen the studies and majors with an eye on their career flexibility. These selections are of interest to him but he says they also will allow for less stressful careers and flexibility in working environment. He thinks this is sound planning as he not only wants to take into account what interests him but also what careers will provide for him and possibly a family one day while still being aware of the effects CD can have on his life. I'm just like "WOW" I chose classes and majors by what professors had the fewest classes on Fridays so he is way ahead of me!

Anyway, hang in there Moms, the journey is long and arduous but it makes each milestone all the more sweeter!


----------



## Maya142

Congratulations C!! :dusty::dusty::dusty:

Would he consider adding lidocaine to Humira? He sounds like my older daughter - she hates the shot, but thinks it's too much work to add lidocaine and would rather just deal with it.


----------



## Clash

We've thought about it. We even discussed with the GI but C said it just sounds like more hassle and he'd rather just use the injector pen. I think it just is what it is, if it became a non compliance issue then I'd push for the lidocaine and syringe but honestly right now I'd be worried he'd forget to put the vials back in fridge!

So I guess he'll just trudge along for now.


----------



## lenny

Congrats to C!


----------



## Clash

Oh btw I've been stocking up on sunscreen for quite sometime. So lake days have rolled around and I showed C where all the sunscreen was and to make sure to put it on.

His first time out with the boat this summer he packed his towel, sunscreen, flip flops etc and invited all his buddies. The sunscreen made it on the boat but not onto him and he comes back with sunburn on his back. I lectured him but he didn't his teen shrug. Three days later he is unsoothably itching. Literally driving him crazy so bad he can't sleep.

We go through all the "home remedies" and otc stuff for about a day and half to no avail so I send him to his GP. It's a rash of some sort and requires steroid cream.

Now this may not have been at all related to him being on mtx but, let me tell you, he believes it was(and I'm not saying any different) and he swears by repetitive sunscreen use now. So, I hate that he to learn this way but wow is he compliant now!


----------



## Mr chicken

DS had similar rash issues after being in the sun ( humira/Mtx)
Swimshirts( rash guards ) are a must in addition to sunscreen


----------



## MamaHenn

Congratulations to C! And congratulations to you mama. It sounds like you've got a great boy with a great head on his shoulders!! I only hope I can say the same thing about my own son in a few years. He's turning 12 so we're in the middle of tweendom  all kidding aside, it really puts some hope in my future when I hear about these young adults handling things so well and taking control of their health. I know it is sad that our kids are all forced to do this so young but comforting nonetheless.


----------



## Jmrogers4

Congrats C! Yep going the whole sunburn route here luckily his friends just stepped up to nagging him to put it on after 2 sunburns in just a couple of days, 1st time didn't even bring the sunscreen, 2nd time brought the sunscreen but "forgot" to put it on.  They went out swimming again today (94 degrees) and apparently his friends nagged him till he put it on.  Doesn't help that his friends are both extremely dark and not prone to burning.
Sounds like C has a solid plan moving forward, a little sad that they just can't pick a college and let things fall where they may but have to take into consideration so much more.  Jack is looking in state but we have 2 years to go although I'm sure it will be here before I know it.


----------



## Tesscorm

What a great update!!!  Loved to read it! 

Sounds like he's made some great plans!!   (I, like you, would've placed much more emphasis on the lack of friday classes!  :rof

And, yep, BTDT with sunburn...  remember S had that horrible burn last year , three days off work just because of the pain...  I think he's learned his lesson re sunscreen now.  

Lots of congrats to C!!!


----------



## Clash

Reading through the congrats posts made me realize something. I need to thank you guys, this group has been such a source of support. But even more than that I feel at home here. I revel in the successes of S, Jack, O, M, DS, Grace, Sarah and Matt, Sarah and Kerry, Andrew, Caitlyn, and so many others. It's been awesome to have the sounding boards, advice, experiences and laughs to pull me forward through the struggles of having a child with CD. 

I truly do wish we could all get together or that there was an ample way for me to show my appreciation for all the support and friendship you guys have shown!


----------



## Jmrogers4

Goodness you brought tears to my eyes, totally agree.  I love reading when our kiddos accomplish great things, cry then cheer them on when they are struggling.  I love updates on things that are happening in their lives


----------



## Clash

I know, I catch myself bragging about one of our kids accomplishments or worrying about their struggles with family or friends. Inevitably, they ask now who is this and I realize oh yeah you don't know them but they are amazing!


----------



## crohnsinct

OMGosh!  Me too Clash!  I will say over dinner, "I am so worried about little penguin or Dustykat's Matt" and my family looks at me like I have three heads!  I have one forum friend here in CT who I am constantly texting asking about her son's FC numbers and bowel habits and weight.  

WE ARE FAMILY! 

Oh and btw - nothing says thank-you like a case of wine...if you need my address, just pm me:thumright:


----------



## Mr chicken

Congrats
Good see he finished and now is moving up


----------



## Maya142

:lol: Crohnsinct - wine for everyone!

Clash - so glad C is doing well. I will be waiting to hear all the wonderful things he achieves in college!

So very thankful for this forum - this journey would be a lot lonelier without it.


----------



## Clash

CIC as I was typing I thought to myself CIC or Tesscorm will insist some wine would be thanks enough!

Maybe I'll ship myself with the wine to enjoy the spirits and company!


----------



## Mr chicken

Now we all know the only thing that would actually arrive in the box at CIC house would be you with some bottles to recycle


----------



## lenny

This board is like a little soap opera, only the sad stories are true and there have been many times where my son and I were quite worried about one of you or your kids.  I had to pull away for a while..too much sadness.

You all have been so much help to me and saved my son so much suffering, I could never thank you enough! 

May your kids all live in remission forever more!!!


----------



## Farmwife

Clash I'm so glad he has a direction in life. Congratulations on raising such a good young man!:medal1:

I feel the same way about this board.:heart:
I just told my hubby yesterday that mlp has now become Mr Chicken....... he looked, he laughed and walked out. He no longer questions me anymore.:biggrin:


----------



## Mehita

I hate to think where DS would be right now had I not stumbled upon the board. You guys rock!


----------



## Tesscorm

Me too...  I'll never be able to express how much all of you helped me get through the worst of it! :ghug:  :ghug:

And, yes, I also tell people (family, friends) about a daughter/son who just did really well in a track meet, or one who swims 2 km in open water oceans or joined the band or got a drivers' license or went to prom, etc., etc....  I used to say 'a friend from my forum'...  now I just say 'a friend you haven't met'!    People just don't understand the friendships here! :hug:

And...  wine! Yep!!!      Getting together... YEP!!!! :dusty:


----------



## CrohnsKidMom

I will repeat the sentiment!  You are all a wealth of knowledge and support, for which I am so very grateful.  

Congrats to your young man, Clash!  A job well done!


----------



## CrohnsKidMom

Oh, about the itchy sunburn... I once had a sunburn on my back that came with a crazily intense itch.  The itch was harder to take than the pain.  I was told by a Dr friend that it was actually an allergic reaction to the sun.  Who knew?! I can sympathize with your son, Clash.


----------



## kimmidwife

Clash,
Congrats on his graduating!!!!!! Very happy for him!!! glad he has his plans in place as well. 
I am so nervous about the sun as well. I gave Caitlyn one of those shirts that protect you from the sun but she hates wearing it. I am glad he said he will be careful from now on. Aloe Vera helps with the sunburn. Good luck with the scopes!
And I agree with everyone this is the most amazing forum and I am so glad for everyone here!!!!! You guys have gotten me through so much you don't even know!!!!


----------



## Gmama

Although I don't post a ton, I totally feel the same way! You are such a great group of ladies & I will never forget all of the support & great advice I received from all of you over the past few years. Especially when LJ was so incredibly sick and my hubby was in denial:rof:


----------



## Clash

So tomorrow's the day for the prep then scope on Friday! Please, Please let the GI say everything is looking good at the surgery site and there is no inflammation present anywhere! I think I may explode if he says anything other than that!

I will openly admit I am still mourning the loss of remicade, wth? I mean there has been no symptom difference between when on remi and when on humira. And remicade wasn't able to fully take care of the inflammation. So, I have no idea why I am still so attached.

I keep repeating to the "don't get attached and know when to kick it to the curb" mantra but apparently it is not working yet.


----------



## kimmidwife

Fingers are triple crossed for you guys!!!!


----------



## Mr chicken

Clash it takes a while to grieve over loading a med
I know DS still grieves over remicade and besides the two reactions
It also caused his skin to peel rashes. Etc....

Sending good vibes your way for Friday 
Just remember no matter what "it is what it is"
And then move on .
Dwelling on the outcome won't help anyone


----------



## Maya142

Ironically, we're still sad that Humira stopped working for M. Even though by the end it wasn't doing anything at all anymore, and the shots were always so painful, when it worked, it really worked!!

Fingers and toes crossed that the scopes look great!!


----------



## Jmrogers4

Good luck hope scopes look pristine


----------



## Tesscorm

Good luck!  Hoping for nothing but good news! :hug:


----------



## Sascot

Good luck!


----------



## crohnsinct

Praying for pristine scopes and biopsies!


----------



## pdx

Thanks for the update on your son--I love reading posts like this!  Hope the scopes go well tomorrow.  

Would you mind telling me a little about your son's high school?  It sounds like it worked well for him.


----------



## Mehita

Good luck, Clash! I think what's hard too is that Remicade seems to work so well for so many kiddos, so when it doesn't or stops for your child, it's hard not to wonder why. Hang in there!!


----------



## Clash

So guys this is what I know so far. The blood work that was done a few weeks ago, yeah I know I'm lagging on it all but I got locked out of my patient portal among some issue with the results being updated. Anyway, he has low HGB, low hematocrit, all his iron levels are low including I think serum to be alert level. His prealbumin is low and he is once again Vit D deficient. All other vitamin levels were solidly normal.

I wish I could be more specific but I just looked over a printed copy the doc had and didn't get to keep it. I'll pick another one up before I leave.

Weight was lower than norm even with the fact that he didn't remove his shoes this time but really he just did prep yesterday so that can account for some of that.

He back getting scope done now and the doc will go over everything afterward.

pdx, my son used to attend a military prep school, after dx the physical components were just too much so we decided on a local private school that has a few different options. We chose to do independent study and he would test at the school weekly. So he was given a syllabus and would accomplish all the work on his own then go to the school on Thursdays to test with class.


----------



## Pilgrim

Make sure the post scope popsicle goes into those cups and bowls and that will be sure to fix him right up 

Praying you get some good news from the doc.


----------



## Clash

So the scope went well! The doc said C's colon was pristine, the anamatosis site was beautiful and the ileum beyond looked perfect! He told C he could be a colon and small bowel model if there was a need for such a thing. Lol He said were it not for the JSpA he would consider mtx taper or removal. He mentioned niferex(sp?) and I'll call the office next we for the way forward.

Here are the flagged lows and their NRR on his blood work

HGB 11.0. NRR 12.6-17.7

HCT 34.8  NRR  37.5-51.0

MCV 78     NRR 79-97

MCH 24.8. NRR  26.6-33.0

IRON SERUM 19   NRR 40-155

IRON SATURATION  5  NRR 15-55

FERRITIN, SERUM 4  NRR 16-124

PREALBUMIN 19   NRR 20-40

Oh and his CRP was <0.3 NRR 0.0-4.9


----------



## Chester31

Great news on the scopes!


----------



## crohnsinct

What fabulous news!  Colon model...LMAO!  

But forgive me if I hold my breath waiting for the biopsies...A little PTSD perhaps?  

Why would he consider an MTX taper...haven't we all been talking about the immunomodulators extending the useful life of the biologics and keeping antibodies at bay?  Clearly the GI doesn't troll around our forum! Not happy he has to stay on the mtx for other reasons but at the same time happy he is staying on it IYKWIM.  

In the meanwhile bask in the glow, you all deserve it!


----------



## Clash

Due to the increased risk with immune modulators and young males some GIs start with combo therapy and then taper or come off the immune modulator. I've seen a few others on this forum whose GIs subscribe to this although in the past it has only been mentioned in passing by our GI.

Also, since there are a couple of studies that show no benefit with the mtx + biologic at maintenance this may be playing a role though that is purely speculative on my part.


----------



## crohnsinct

Yeah...interesting.  At the girls' appointment this week our GI did a brain dump on the immunomodulators and their use with the anti tnf's.  Seems the tide is turning away from aza (cancer risk) and toward mtx...It is apparently just as successful and years ago was the chosen method but for some reason the industry turned to aza.  Our GI feels we are going to see a shift back to mtx and that it is just as effective. 

I just find the varying approache rather interesting.  I have also read that after 6 months some docs like to taper the use of the immunomodulators.  

Here is a presentation for your enjoyment 

https://www.youtube.com/watch?v=MJWBV0Fy_Kw#t=107


----------



## Clash

Yeah, I think the prevailing theory that AZA has a higher risk isn't based completely in fact since mtx hasn't been a goto for CD as long as AZA. I remember our doc saying that when the meds showed promise GIs leaned toward AZA and rheumys leaned toward mtx and that now things were shifting. The studies done were at a time when AZA was the more prevalent choice and yet there were patients that showed mtx carries the risk as well. Maybe studies done now that this shift is in more full swing would reveal even more about such risks.


----------



## Mr chicken

I tend to disagree 
Mtx as you point out has been used for years by rheumos
Based on those studies still less risk


----------



## Clash

I agree that mtx has been used with rheumatologists longer but I remember a study someone posted about immune modulators and risk and there being a difference on the rheumatologist side and the CD side. Maybe an article and not a study it has been awhile


----------



## Maya142

We have also heard from two GI's (one at chop and one at Mount Sinai) that GI's are starting to use MTX more and Aza less. Rheumatologists definitely prefer MTX - in fact, when we were talking about putting M on Imuran, one rheumatologist told us not to because it could have "fatal" side effects (that was a really helpful comment...I didn't sleep for weeks).

Glad C's scopes looked great! His ferritin is very low - when M's was around that (hers was 2 I believe) and we could not get it up fast enough with iron supplements, she had to have iron infusions. Has his GI said anything about that?


----------



## Clash

I'm going to have to call on Monday, these results were from blood work done in the middle of May so I worry that it's worse. Since this was on the endoscopy level and the GI had a day of kids and scopes ahead of him we didn't discuss this as deeply as I would've liked. He mentioned Niferex. It was hard to communicate because this was after scope and C with all the sedative was filled with questions and comments that kept sidetracking us.

I'm going to call Monday and ask about the niferex and about any other tests.

C is absolutely hilarious with the happy juice! He talked for a straight hour otw home, then just zonked out for 4 hours.


----------



## awmom

Glad the scope went well and hopefully the biopsies will come back as "pristine"! I do wonder about his labs. Did they repeat the labs at the time of the scope?


----------



## northwesterner

Clash said:


> Yeah, I think the prevailing theory that AZA has a higher risk isn't based completely in fact since mtx hasn't been a goto for CD as long as AZA. I remember our doc saying that when the meds showed promise GIs leaned toward AZA and rheumys leaned toward mtx and that now things were shifting. The studies done were at a time when AZA was the more prevalent choice and yet there were patients that showed mtx carries the risk as well. Maybe studies done now that this shift is in more full swing would reveal even more about such risks.


Generally speaking, AZA is more easily tolerated by most patients. 

MTX is rarely tolerable orally, much better by injection but that delivery method is difficult, at best.

I chalk up the use of AZA/6MP over MTX to side effects and delivery.


----------



## Catherine

As ferritin never gives a false low and the hemoglobin is out of range.  The results look like Iron deficiency anaemia.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/iron_deficiency_adults


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## Clash

Catherine, GI said the same thing and the results sheet also said iron deficiency anemia and gave a brief description. We talked about an iron supplement but I was thinking I should ask for testing like endoscopy vor imaging to determine if there is an area higher up causing it.


----------



## Clash

Ok gurus, what do you all think of this plan? After some reading it seems that iron is most absorbed in the duodenum. I'm thinking of asking for an endoscopy to be scheduled when I call on Monday. Because an endoscopy would show into the duodenum, right?

We went through a food list yo kinda see if C was just missing iron in his diet. It seems he isn't. He does eat red meat(grass fed beef) although chicken is a constant staple. He is a kind of creature of habit so there's instant steelcut oatmeal most everyday, a peanut butter sandwhich or with pretzels. He is a Thai sushi fiend so that's about twice to three times a week. Then lots of chicken. Not as many vegetables as he used to get due to his work schedule but we try to get them into at least some. Plenty of dairy and even the cereal is fortified. Am I missing something? Could it be just diet? 

Is there another test you guys would suggest? Since these results were middle May I'm going to ask they be repeated but to schedule endoscopy then if results are better than expected I can always cancel. What do you all think?


----------



## Maya142

An endoscopy is not a bad idea. I'm surprised they didn't do it with the colonoscopy.

That said, when my daughter had iron deficiency anemia and when we scoped her duodenum was one of the places she did not have inflammation (she had inflammation in her stomach, terminal ileum and through her colon). She had a hard time tolerating iron supplements, but taking them with food helped a little.

Fingers and toes crossed that the biopsies look perfect!!


----------



## Clash

Since the lab snafu and the labs not being sent to the GI office until the day of the scope appt. we had no reason for an endoscopy. The colonoscopy was a follow up to the surgery to make sure all was healing right and that his CD hadn't returned at the site. And maybe since C has never had an endoscope show CD in those areas seen by endoscopy.

A previous lab work by rheumatologist showed slightly low HGB but just barely. No one seemed concerned about the anemia until we got these latest results that included ferritin and that was too late to add endoscopy.(Like the nurse faxed them down to doc as he was getting ready to wheel C in.

C had slight anemia at dx and tried iron supplements but he didn't tolerate any of the ones the GI px'ed. They would bind him up really bad, one ending in a short hospital stay to make sure it wasn't an obstruction but it was just the constipating factor of the iron supplement. So not sure what supplemental iron he px next and will the supplement interfere with the endoscopy results? I would think not but better to ask here than just wonder! Haha!

I hope the biopsies look great too, the GI took numerous ones throughout colon, surgical site and ileum so hopefully all comes back well.

I would just think that further testing to determine the cause of anemia would be warranted instead of blindly treating? Am I wrong? Is this going to sound far flung to the GI?


----------



## Maya142

M had the same problems with iron supplements - constipation and nausea and bad abdominal pain. That's one of the reasons we moved to iron infusions - they were quick and easy and made a huge difference to M's fatigue. She had 5 I think.

We saw two hematologists but never got a real answer about the iron deficiency anemia except that she must have been bleeding from somewhere. M had never had visibly bloody BMs at the time and a stool test showed no blood. We eventually gave up trying to figure it out and just treated her.


----------



## Clash

Ok that's good to know. So, why the hematologists? Did she have all the tests to look for the source with the GI then sent to hematology?

So after the 5 infusions did it just straighten itself out? If the GI px'ed iron I fusions could we get them at our local hospital like in the iv lab?

If the blood was coming from somewhere high up like say the duodenum would occult tests show blood?
And negate the need for an endoscopy?

Thanks for a this information Maya142 I really do appreciate it!


----------



## Maya142

M's rheumatologist was the one who wanted her to see a hematologist - I think she was just being cautious since M's ferritin was pretty low. So we saw one locally, who recommended iron supplements and if those didn't work, iron infusions. Then her rheumatologist wanted M to see the hematologist she knew :yrolleyeswho also recommended the same thing). 

After the 5 infusions, it did straighten itself out. M takes a multivitamin which has some iron in it and that's it - she's never had that problem again.

We did have the infusions done locally, in the local hematologist's office. They weren't long - maybe 30-45 minutes (though generally people on here seem to have longer ones).



> If the blood was coming from somewhere high up like say the duodenum would occult tests show blood?
> And negate the need for an endoscopy?


I have no idea about this - wouldn't an occult blood test show blood coming from anywhere?


----------



## Farmwife

Clash, Grace had visible tears in her stomach in her upper scope and I pulled blood out of her tube and the  occult blood sample showed nothing during this time. For Grace it wasn't accurate!


----------



## Catherine

The only really good absorbed sources food sources of iron are meat with red being the best by far.

Combining eating is required.  

You need to add a source of vitamin c to the meat meals.  Eg orange or pineapple juice.

He should avoid eating the following within 2 hours with way of the iron rich meal.  Milk, dairy products, cola, tea or coffee.


----------



## Clash

I'd say at least 3 meals a week contain beef and then we usually have steak on the weekend or grilled burgers. How much more red meat would he need?

The rest of the time he is big on chicken as his protein. He eats a lot of fairly in the form of cheese, no mild unless cereal, no coffee and he does Apple juice or OJ with breakfast. I'll make sure he cuts back on soda, we just get the mini cans and he has maybe two a day.

Maya142 what did M's GI think of the anemia?


----------



## Mr chicken

http://www.amazon.com/Solgar-Chelated-Iron-Tablets-Count/dp/B00020IC8A

DS uses chelated iron much easier on the gut with a small amount of food 
Ferritin can be low due to JSpA or crohns
Inflammation causes it to decrease as well
He also has duodenitis found on almost all of his scopes
No changes needed just zantac or ppi since normal crohns meds treat it
No soecific meds for the upper GI tract


----------



## Mr chicken

Clash once ferritin gets low your wont increaess it by diet alone
Iron is what he uses everyday ( think the dinner you cook )
Ferritin is the extra stores of the body ( think pantry )
If the pantry is nearly bare and he has more going into his meals everyday for whatever reason - the body won't catch up without a supplement or iv infusion
Iv infusions have high allergic reaction risks associated which with DS history we tried pills first .

DS took 50 mg elemental iron for 8 months before we saw a big rise 
After a year it had built up significantly into the normal range


----------



## Clash

Thanks MLP, so here's another question referring to the JSpA. Does inflammation have to be occurring with the JSpA for there to be anemia? The rheumatologist said his xrays and scans looked really great. Which at least correlated with the fact that he hasn't had any pain. So is it another mechanism that causes the anemia with JSpA?

He sees the rheumatologist again in July for check up. We aren't adding the meloxicam because he is doing so well as far as no inflammation or pain so we aren't rocking the boat.

So do you look for the source since a possibility is active CD or do you just treat and move on? It's so hard to know, because C has been asymptomatic with active disease, if your best option is to test, test test or just treat and move forward


----------



## Pilgrim

I would say treat and move forward. There's still time for Humira to work on underlying inflammation and there might be a night and day difference for him energy wise when the anemia is resolved by supplements or whatever route you go.


----------



## Maya142

Clash, I had the timeline wrong. M's had iron deficiency anemia a year before she was diagnosed with Crohn's, not the year she was diagnosed. So her GI did bloodwork, an occult stool test (negative) and a FC (which was 78). Since the FC was only a tiny bit elevated, we did not scope at that time.

In retrospect, we think the iron deficiency anemia was caused by the Crohn's and not JSpA because her joints were actually doing very well at the time (she was on Humira when this happened).

If C's MRI's are clear and if his joints do not hurt or aren't very stiff, it seems unlikely that the JSpA is causing the anemia. I think anemia is JSpA is generally caused by very active arthritis. M is often anemic because of her arthritis, while my older daughter has only been anemic once. 

Maybe you should ask his GI whether it should be investigated further given C's history of being asymptomatic? Another option would be to treat it for now, but if it happens again, then to follow up with tests (endoscopy, pillcam etc.).


----------



## Clash

I think I'm going to leave it up to C if he wants to just treat and move forward that's fine if he would rather treat and further investigate then that's fine too.

He was concerned about it yesterday when we were otw home but he was full of silly meds too so he may be past it today


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## crohnsinct

Wow Clash!  I HATE when things are so muddied like this.  I think your approach is a good one.  Treat or test and talk with GI.  

FWIW - O has anemia.  Always has and seems always will.  Her vegetarian eating doesn't help much.  She takes iron every day but when she was really low in the fall our GI and dietician were all over infusions. 

Would be interested to hear GI's take on this.


----------



## Clash

My cousin was always anemic but she was a girl and the Dr never took it very seriously and said it was due to diet and her period.

But I talked to my aunt today and she was always slightly anemic her ferritin levels were never as low as C's and she didn't have as low total saturation or whatever that one was.

The first time C was anemic it was only slightly so but he had also just been dx'ed so his CD was raging. I always thought the fatigue was anemia then but he is much more anemic now and it hasn't slowed him down at all. In fact, he went out with friends last night camping, worked all day today and is now out on the lake with his friends. He said the only way he can tell he's anemic is he gets cold really easily.


----------



## crohnsinct

Oh for sure I think something more than what is going on with O is at play with C.  Weird though that he isn't feeling a change in his energy level etc. 

Yeah, I always got the same with O...don't worry girl, diet blah blah blah and even with her initial flare they were sending us away with a referral to see a GI 3 months later.  Not until I asked them to prick her finger and her HGB was 7 did they take it seriously.  Makes me wonder if they took all those other tests seriously if we would have gotten a dx sooner. 

So yeah, PTSD tells me C should check all aspects of all diseases!


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## lenny

My son was able to overcome his iron deficiency on a vegetarian diet.  He eats a lot of lentils, baby spinach, hummus, strawberries, nuts (blended) and tofu.  He's low on D.


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## Tesscorm

S was anaemic at dx, HGB was below normal, ferritin was approx. 30 and dropped as low as 14.  FWIW, he had inflammation at his duodenum when dxed.

He's never taken any iron supplements and, over time (quite a while), his HGB has gotten into normal range and his last ferritin level was 67 (but this was a year ago - ferritin hasn't been tested very often??).

It seems as S moved closer and closer to remission, both his HGB and ferritin improved.

If an infusion takes him into normal range, perhaps you can just 'treat' now with an infusion but keep testing ferritin; if it drops again, further testing (endoscopy) could then be done??

FYI, *blackstrap *molasses is a good source of iron.  When my iron was low, I was adding a spoonful to my oatmeal (not great but not horrible either).  I also added a spoon to a cup of hot water and just drank like coffee/tea (tasted better than it sounds but, again, not great).

Does he complain of Restless Leg Syndrome?  It was horrible for me when my hgb and ferritin was low...  improved as soon as my iron levels improved.  I only take iron supplements sporadically now but, RLS seems to be a good (weird :lol indicator for me when my iron slips...  as soon as I feel the beginnings of RLS, I supplement and it goes away.


----------



## Catherine

We treated iron issue for 4 years prior to dx.  Sarah has a history of iron deficiency anemia with normal ferritin.

Ferritin acts as a marker of inflammation.  So your ferritin levels can read normal or high even if though there are no iron stories.  Make sure that iron studies or iron panel is done and not ferritin alone.

When the hemoglobin level drops slowly the body gets used to working with a low level of hemoglobin.  In Sarah case she was swimming 16 hrs a week at hemoglobin level of mid 9.5.

Ideally before starting a trail of iron supplements you would have another blood test to the give the iron levels starting point.  After two to three months you would retest and you should see an improvement in iron levels and hemoglobin.  If you want to get a true reading of the iron levels you would stop supplement 3 days before the test as supplements can cause false high in the iron levels but this is more improvement when you deciding to cease supplementation.


----------



## Clash

Catherine did you see the results I posted on the previous page? Are there other tests he should have had? His ferritin was very low as was his total saturation.


----------



## Catherine

Sorry Clash, my post wasn't clear.  The results you posted are iron studies.  You could have B12 and folate run as they also effect hemoglobin levels.

My comment was in part about using ferritin and hemoglobin levels alone to decides wheather with iron deficiency Anemia is present.

Unlike most other supplements iron should only taken when it clearly needed.  Iron supplementation require regular monitoring.


----------



## Clash

Oh ok I understand. They did do b12 and it was normal. I'll have to check and see if they did folate.

Edit to add: I looked and folate was good too.

So, are those accurate or could he truly low in one of those and it showing up in the iron instead? I'm probably not wording the question properly.


----------



## crohnsinct

Geez Clash!  I know from time to time one of my posts have confused you but nothing confuses me more than these iron discussions...except for maybe when you were going through all that POTS stuff.  All I can say is C has the exact right mama on the case.  

If I ever have an iron question you and Catherine are my go to!


----------



## Clash

CiC, nah I'm just as confused as you are.

I've been wracking my brain as to why his iron is low. I've even entertained the idea that he hasn't been as compliant with his folic acid as he should be.(he says otherwise). But then wouldn't that show up in folate instead of iron? I know he's compliant with humira and mtx because I'm right there when he does it or shortly after to remove the sharps container but folic acid is everyday. I'll have to start paying more attention but refills seem to be coming as. scheduled so idk.

I have a call into the GI nurse now.


----------



## crohnsinct

OOOOH!  You may be on to something!  That happened with O once.  She wasn't taking her Folic acid and she got super anemic.  I don't know what her folate showed but there are enough foods fortified with folate that maybe it would still come up normal but our mtx users need more?  Just guessing here...I am much better with paper plate and spoon theories! 

Keep us posted!


----------



## Tesscorm

crohnsinct said:


> nothing confuses me more than these iron discussions...!


Me too!!!  I thought I once had it all straight but...  I'm just as confused as ever. :ybatty:  Was great with MLP's analogy of the kitchen and pantry but then Catharine says ferritin does not reflect stores!! :yfaint: 

But, won't jump in with questions because I'll just sidetrack needlessly!


----------



## Mr chicken

http://itre.cis.upenn.edu/myl/Erichsen.pdf

See this one


----------



## Mr chicken

In DS case  ferritin was the only low value all his other numbers were normal so in his case it was reflective of the amount stored
Other can have increased ferritin numbers on blood work during inflammation.
I just haven't seen it for DS


----------



## Clash

So at one point in MLP paper it says if TIBC is high and ferritin low then that is a good indicator of iron deficiency anemia. C's *ferritin* was *4* with *NNR 16-124* and his *TIBC* was *356* with *NNR 250-450* so not really high. But do they mean high normal or high as in above normal?

Also did I miss something on folate. I read it to say folic acid induced anemia would show up quickly in folate results but am I reading that wrong?c's folate was solidly normal as was b-12.

And is in not concerning since his *HGB* is *11.0* *NRR12.6**-17.7* meaning since his HGB is only slightly below normal?


----------



## crohnsinct

Clash:  What test did thy run to determine B12?  If just the b12 level it isn't always a good indicator of deficiency.  You have to run the MMA test.  take a look at this from the forum wiki 

Vitamin B12 deficiency leads to a serum build-up of methylmalonic acid and homocysteine. Because of this, Homocysteine and Methylmalonic acid levels are considered more reliable indicators of B12 deficiency than the concentration of B12 in blood. Upwards of 50% of patients with vitamin B12 levels between 200–400pg/ml (147.6-295.2pmol/L) will have a vitamin B12 deficiency on the basis of elevated levels of homocysteine and methylmalonic acid.[7] Other studies and papers suggest the same with slight variances on the levels

On another note....why can't I reply to messages...I am only given the option of quick  reply anymore and when you quick reply you can't use smilies!


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## Clash

We've been using that test since I saw the thread on here about it. I just spoke with the GI nurse and he will start niferex. Well get blood work in a month. Hopefully this will take care of it. She is going to speak with the doc to see if he thinks further testing is warranted.


----------



## Clash

The GI really doesn't think that anything is going on higher up. He will redo lab work in a month and see where we stand. This made C happy so I'm happy!

Or course, I'll be anxiously awaiting those results and a trend upward over the next few sets of labs!


----------



## Maya142

M's TIBC was high (above the upper limit) when she had iron deficiency anemia. Otherwise, her labs looked pretty much identical to C's. Her HBG was only a little bit low - 10 or something like that.

M's ferritin does reflect inflammation often - hers is usually way above the upper limit. It's only been in the normal range once or twice and low the one time she need iron infusions.
I don't know if this info is helpful at all but iron numbers really confuse me too :lol:

Very glad C doesn't need more tests for now. Hope the iron supplements do the trick.


----------



## Catherine

Clash said:


> Edit to add: I looked and folate was good too.
> 
> So, are those accurate or could he truly low in one of those and it showing up in the iron instead? I'm probably not wording the question properly.


No they won't show in the iron number.

Anemia cause by low iron make the red blood cells smaller.

Anemia cause by vitamin B12 and folate make the red cells blood bigger


----------



## Catherine

MCV 78     NRR 79-97

Sorry I can't do multiple quote.  MCV is low which means the red bloods are smaller than normal.  But not by much so I was wondering whether the B12 & Folate making some of them bigger.

The below explains it better.

https://www.medialabinc.net/spg579126/red_blood_cell_rbc_size_variation.aspx


----------



## Catherine

Clash said:


> And is in not concerning since his *HGB* is *11.0* *NRR12.6**-17.7* meaning since his HGB is only slightly below normal?


The answer to this question actually depends on where his haemoglobin level normal sits.

If It normally sits at just in the normal range it not that concerning yet.

If it normally sits higher it is more concerning.

For example my daughter (Sarah) haemoglobin is now always around 11.0 to 11.04.  This also out of range for a female but is not considered concerning (that doesn't mean we don't want it higher).  Daughter number 2 always has a haemoglobin level of 14.5, for her a level of 12.0 would be concerning even though that would still be a normal level.


----------



## Clash

So C's biopsies came back and they are not good. I'm in slight shock right now and I know I didn't ask any of the questions I would need answered.

He has acute inflammation at the terminal ileum and the site of anastomosis, it's active CD. His colon is good. He will have to have a scope in 4-6 months. His follow up with the GI is scheduled for mid July as we were scheduling it for after his next rheumatologist appt which is mid July.

The nurse said better it was acute than chronic but he just had surgery last August, he has barely had time for anything to become chronic, in my opinion. I completely for got to ask about a dose or schedule change with the meds but I wouldn't have made a decision any way as C is away at the beach and he'll need to be in on all that.

He has been on humira for only 3 months so it still needs time anyway. Although, since it is acute I am concerned this has come about since starting the humira.

It always niggles in the back of my mind, a convo, the GI and I had early on about some patients not fully responding to tnf blockers. He explained in some patients tnf if the driving force in their CD inflammation, but in others it's only one of many. The ones where tnf is the driving force the patient gets great efficacy from remicade or humira but if tnf is equal to the other forces then they may get partial response but their disease may simmer on. He has said before that he is afraid C is one of the patients that doesn't get full response. He, in the past, mentioned other biologics instead of tnf but we decided to try humira first before writing them all off.

Ughh I really really freaking hate this disease. C left for the beach today so I'm not going to talk to him about it until he returns.


----------



## Pilgrim

Probably have enough time for a glass of wine and some chocolate before he gets home.


----------



## Clash

Oops meant ileum not terminal ileum.


And yep much wine


----------



## Jmrogers4

Ohhh big squishy hugs Clash!


----------



## Tesscorm

Ugh, I'm really sorry about this.  How frustrating and maddening (the words don't do justice :voodoo.

I suppose there's test for the TNF question/response??

Yep, lots of wine and chocolate...  wish I could give you some hugs too! :ghug:


----------



## Farmwife

Hugs


Ya, the GI and rheumatologist think Grace is in the same boat.
When we finally combined all three meds it started working better and finally a clean( ish) scope.


----------



## Lindseyw4

sorry for your boy! at least he's out enjoying summer  big hugs to you both. i'll raise my glass to the health and well being of you both tonight, with my own glass of wine


----------



## Mr chicken

Hugs
That's a tough one ....
Humira takes 3-5 months to reach effective levels in the blood .
So it may be that it just isn't at a high enough level 
Additionally you can go up to once a week dosing .
So still options 
Enjoy the :wine


----------



## Maya142

Really sorry to hear this Clash. M is also one of those kids - we have been talking about other kinds of biologics too. 

Will be thinking of you and C :ghug:


----------



## Catherine

Sorry Clash, these explains the iron levels.  In our experience it is unlikely that your son is going to respond to oral iron.

Thinking of you guys.


----------



## Clash

C just texted to say they made it safely to the beach. So I've got that worry behind me. He has to go into work the day he comes back so we'll probably tell him about the results on Sunday.

This sucks. Truly sucks but at least he isn't symptomatic so there's that.


----------



## pdx

So sorry to hear about the biopsy results.  I really hope that a few more months on Humira (or a higher dose) can knock out the inflammation.


----------



## Chester31

Really sorry to hear this. I fear we may also be in the same boat. My son started Humira in March too but ended up in hospital for 5 days just a month in. He too has small bowel disease and suffers from anaemia. He is now on weekly Humira and has just added in Mtx. He is also on EEN through choice until he gets to the end of his GCSEs. So hoping the combo is going to get things under control but I have a nagging doubt....


----------



## crohnsinct

I can not even type the words I want to right now lest I get kicked off the forum!  I can only imagine how gutted you were at this news.  SO NOT FAIR!  I effing hate Crohn's:voodoo::voodoo::voodoo: 

I am really hoping that it is just a matter of the Humira needed a little more time or a dose/schedule change.   

Did the doc say if there was anything else that could be added to the Humira to cover the "other causes"?  

FWIW - our doc seems to be pretty jazzed with the way Entyvio works (remember my sticky stuff explanation).  Maybe that would be a future option? 

Is 8 a.m. to early for wine?


----------



## Clash

Thanks for all the support guys!

My husband and I have gone back and forth over now what? We'll give the humira time but honestly this seems eerily familiar to our experience with remicade. I loved remicade because with it my son became asymptomatic but if you look back it was almost two years of tweaking, upping and adding that only resulted in surgery. Was that time wasted? Could I have fought for one of the other biologics not related to anti tnf and gotten more promising results? How long do you give a med? 3 months is definitely not long enough but at scope time it will have been 7 or 9. C still has room of upping mtx as well. So up both or take the time to try one then the other so we can determine what is working(probably the better option but again more time)

I've been feeling guilty for really pushing C to stay local the first two years. Not that it was an issue once he got his "superjob"(he really loves this job and the people he works with, that is, in fact, who he is at the beach with, his work crew). That guilt is safely put to bed now! Ha!


----------



## Tesscorm

Hate that you and C are now faced with these decision. :ymad:   

What I'd meant to say in my post above is 





> I suppose there's *NO *test for the TNF question/response??


  I imagine there's not or C's GI would have run it before, but...  thought I'd ask.

I do hope tweaking humira and/or mtx will do the job but, I understand the hesitation in wasting time 'tweaking'.   What is your sense re the GI's next plan?    I don't remember, has FC been a decent indicator for C?  Could you take some time to tweak dosages but stay on top of it with relatively frequent FC testing?

Would he consider supplemental EN in addition to humira and mtx?  Just asking because supplemental EN seemed to 'control' S's inflammation, didn't eliminate it but seemed to keep a lid on it for quite a while.  Wondering if supplemental EN could help C in the same way;  not allowing the inflammation to 'grow', while giving humira and mtx a bit more time to work??

Lots of hugs... :ghug: :ghug:


----------



## Clash

There may be a phenotype/genetic/cytokine blah blah test(like how I threw in everything but the kitchen sink there?) test but if GI mentioned it was in the clinical research area not in the we should test him area.

I've always said oooh FC is a good test for C but the GI isn't as sure, he has wondered if C's one normal FC was maybe not accurate since the area removed was so extensively ulcerated, lacerated and nearly perforated from chronic inflammation. His last FC was normal but nurse said yesterday she wouldn't take that to mean this cellular inflammation wasn't present then.

I'm not sure what C would or wouldn't consider. In spring he wouldn't have considered EN at all because he was battling his allergies and sinus gunk constantly. But, he may now.


----------



## Sascot

Sorry to hear you are faced with these uncertainties and decisions. Hope whatever choice works in getting rid of the inflammation.


----------



## Tesscorm

If he would consider EN at all, thru NG really made it simple for S.  (Assuming C has no issues with daily insertions/removals.)  He'd pop it in before bed, hook it up and be done when he woke - no thoughts re formula during the day.

Too bad about the test, actually both tests TNF and FC...  Would be less frustrating if you were able to take out, at least, one or two of the unknowns.


----------



## Maya142

> There may be a phenotype/genetic/cytokine blah blah test(like how I threw in everything but the kitchen sink there?) test but if GI mentioned it was in the clinical research area not in the we should test him area.


Our rheumatologist said the same - there are tests  but they're very expensive and only currently used in research. Personally, I think it would be less expensive if insurance paid for them than for paying for us to blindly try drug after drug, hoping that one works.

Our GI is also excited about Entyvio. They would not use it for M though because of her JSpA, however, perhaps C's JSpA could be controlled just with MTX?

Sending HUGS!


----------



## Mehita

So sorry to hear this news, Clash. Like the others have said, I hope it's just a matter of more time and adjustments with Humira, but I totally understand what you're saying about wasting time as well. 

Might this be a case where he needs some EEN or pred to tide him over until Humira hits it's working period? It's not like this would mask symptoms since he doesn't have any anyway, though I suppose it could affect the scopes.

I wish there were better answers and options.


----------



## kimmidwife

Very sorry to hear this news! 
I think your doctor is right that antitinf may just not work for some people but also agree with giving it more time. really really hate Crohn's disease!!!!!!
Was hoping the combo treatment was really working for him. Though both drugs do take some time to kick in so maybe it really is just a matter of waiting longer. We are in the same waiting to kick in boat as well.


----------



## Tesscorm

How is acute vs chronic inflammation determined?  Do you know how much inflammation is present?  Just wondering, if it's only at the surgical site, is it possible that a small patch of inflammation was missed?  Because if this is a possibility, it may mean that C's response to anti-tnf is not an issue at this point??

And, when inflammation reappears at surgical site, which I know is common, why is that?  Why that same area and not somewhere else?


----------



## Clash

Maya142, same I doubt the rheumatologist would go with just mtx for his JSpA. With clean imaging and decent physical she was the one wanting the humira moved to once a week and meloxicam added and mtx upped.

Mehita, pred hasn't worked for C in the past he gets the awful pred side effects without the benefit. I'm going to ask him about EN. We will see how open to the idea he is. He won't drink them as he has never figured out how to without gagging and vomiting. Also, he may not be open because he is asymptomatic so kinda outta sight outta mind but I'm going to broach the subject with him.

Kimmidwife, yeah he has been on combo of biologic and mtx for quite sometime. Only the biologic has changed and back last year we switched to mtx injection. We're going to keep pushing forward with both for sure for now. I hope the meds kick in for Caitlin as well!

Tesscorm, the acute patches were found at the anastomosis but also throughout the ileum which was clean last time. I don't think any area was missed as they try to resect to both sides being clean. I'm assuming it is determined through the biopsy on acute or chronic but could imagine if the disease was visible to the eye then docs may have some visual comparison for that, like the surgeon saying C's respected area was blatantly, severely chronic when he removed it.

So now that the gangs all here I say we have another round of wine!


----------



## Maya142

Would C use his NG tube? Maybe even supplemental EN (at night) would help.

It's so hard when they have multiple diseases - and it sounds like biologics are getting more specific (Entyvio for example). Then what do you do if your kiddo has both??

We're all with you on the wine :drink:


----------



## Clash

That's the subject I'm going to broach with him. I wouldn't even bring up drinking it since that has been a huge fail each time. Like I said about I don't know, since he is asymptomatic he may be in outta sight outta mind mode. In which case, EN wouldn't be something he would do.


----------



## Tesscorm

Yeah, I was suggesting only supplemental at night.  If it was EN that kept S 'stable', his only med was nexium, normal diet and 1500 cal of formula each night (1000 ml).  As I said, it didn't take away all inflammation but kept the amount of inflammation constant for almost two years.  I know this isn't the goal but I'm thinking supplemental EN might act almost as a stop-gap, while humira/mtx get some more time to work.


----------



## Mr chicken

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896778/#!po=95.3704

Have you seen this approach clash ...


----------



## Clash

Tesscorm, I knew you meant EN. That is the only type C has ever done. He took in 2700+ calories over night then ate what he wanted during the day.

MLP, yep I read the one you posted. I've thought about this one, sounds interesting. I could be convinced but who knows with C. Diets, in the past only made him lose weight, no plus side. Also, since foods don't outwardly affect him he'd be a harder sell.


----------



## Clash

Yep 18 comes with all kinds of little bylaws. Much easier when they k ow you have the final say.


----------



## Maya142

Came across this study:



> In general, oral supplementation in iron-deficiency anemia should be administered with a target to restore/replenish the iron stores and the hemoglobin level in a suitable way. However, in patients with IBD flares and inadequate responses to or side effects with oral preparations, intravenous iron supplementation is the therapy of choice. Neither oral nor intravenous therapy seems to exacerbate the clinical course of IBD, and intravenous iron therapy can be administered even in active disease stages and concomitantly with biologics.In conclusion, because many physicians are in doubt as to how to manage anemia and iron deficiency in IBD, there is a clear need for the implementation of evidence-based recommendations on this matter. Based on the data presented, oral iron therapy should be preferred for patients with quiescent disease stages and trivial iron deficiency anemia unless such patients are intolerant or have an inadequate response, whereas intravenous iron supplementation may be of advantage in patients with aggravated anemia or flares of IBD because inflammation hampers intestinal absorption of iron.


http://www.ncbi.nlm.nih.gov/pubmed/26061331


----------



## Clash

Ok guys why is it when my kid finally heads off to the beach that the news stations flood their sites with articles like this

http://www.11alive.com/story/news/health/2015/06/12/florida-flesh-eating-bacteria/71131584/

Ok ready for my kid to come home now and possibly live in a bubble. I mean it doesn't help with live on a lake either!


----------



## Mr chicken

Yikes
No more googling
Go with the stats only 32 cases last year all year vs millions at the beach ( including elderly who have weaker immune systems )
So chances are slim


----------



## Clash

I'm trying! Are any of you guys seeing a lot of stories pertaining to it on your local stations? We are kinda being inundated. Of course, partially because a Mom in ATL is fighting it right now so that has only added to the frenzy.


----------



## crohnsinct

Haven't heard anything up here about it.  But yuck!  I don't know if it would un nerve me that much because I put my kid in a disgusting bacteria filled pool everyday.  Got the talk from the GI about all the fecal matter found in the pools and how it is just one big germ soup.  Apparently the chlorine and water temp aren't enough to kill it all.  Ugh!  Want to throw up just thinking about it so I don't!


----------



## Farmwife

Thanks God for my great lakes. Now no one tell me what nasties might lurk in there.:yfrown:


----------



## Sascot

Wow, that sounds awful. Something else to worry about! I remember being stressed for days after Andrew fell into a small stream near the house. Kept waiting for something to happen, but all was fine.


----------



## Clash

Maya142, I know you've told me before but I can't find it...what are the biologics approved for CD/JSpA? Is it just humira and remicade? Or is there others now? And what biologics have ongoing trials for AS that have already been approved for CD?


----------



## Mr chicken

Clash there was a JSpA webinar today through the ssa .
They cover this but it was trials for adults so I didn't write it down
It should be on line next week


----------



## Clash

Ughh I meant to watch that but we're out of town and it completely slipped my mind! Thanks, MLP!


----------



## Maya142

For AS and Crohn's - Remicade, Humira and Cimzia are approved.

Simponi is approved for AS and Ulcerative Colitis but not Crohn's. Simponi is a very easy, painless shot (though I will say M has not really improved at all on it so far).

Stelara (ustekinumab) - one small trial in AS (good results), many trials in Crohn's but not approved.

Secukinumab (IL 17 inhibitor - very new) - several AS trials look very good BUT appeared to worsen Crohn's, Crohn's trials were stopped in the middle of phase 2 I believe and now there is a warning on the drug. Right now approved for Psoriasis but will be approved for AS and Psoriatic Arthritis probably (this one is probably out for C, we are thinking about it for M though).

Xeljanz (tofacitnib) - This is a JAK inhibitor (and a pill). Approved for RA, in trials for AS and Crohn's. Don't know how the trials look, but a GI at Mount Sinai suggested it for M.

Apremilast (Otezla) is not a biologic but a small molecule (PDE4 inhibitor or something like that). It's approved for psoriatic arthritis. The trials for AS weren't that great. I don't think it has been tried in Crohn's. Side effects include diarrhea and weight loss so we ruled it out for M and I don't really know any more.

Unfortunately, those are all the ones I know of. We are in the same position with M (except of her AS is bad and CD is under control) and it just sucks so much. I wish there were more options  
Sending hugs.


----------



## Clash

So I'm assuming entyvio didn't go well for AS?


----------



## Clash

Also, did either of your girls try Cimzia? I can't remember. I'm sorry guys if my memory seems shot, ever since I started beta blockers, I literally can't remember from one moment to the next. It truly sucks!


----------



## Maya142

I think Entyvio is gut specific and hasn't even been tried for AS.

However, S's rheumatologist told us of one patient she has who has IBD and AS (can't remember if it was Crohn's or Ulcerative Colitis). He was on Simponi but the IBD was out of control, so they added Entyvio. They put on him the intravenous form of Simponi (called Simponi Aria - so far only approved in RA, but exactly the same thing as the shots, just newer) so that they could lower the dose of Simponi easily.

With Simponi AND Entyvio he is now doing well. He is not much older than our kids she said - in his 20s or so. Thought it was a pretty interesting case.


----------



## Maya142

No Cimzia yet for my girls. We may try it next for M before giving up on TNF-inhibitors (mostly because our options aren't so great for M - Stelara has barely been studied in AS and Secukinumab worsens Crohn's) or we may try Humira again (since is the only one M responded to REALLY well).


----------



## DanceMom

Bacteria at the beaches makes the local news every summer. I do worry, but I worry just as much when I take her to a theme park. We leave a week from today to spend a relaxing week at the beach. A week where I will do my best to put aside all my worries and enjoy life. I hope your boy is doing the same!


----------



## Clash

DanceMom, we live on a lake so in Georgia summers the risk is there as well, they just aren't squawking about on the news every evening. Ha But I hope he is having a blast and rolling his eyes that his Mom told him to check for cuts before going  into the ocean and to avoid raw oysters! LOL


----------



## Clash

C made it home yesterday. He had a blast at the beach and is ready to go back! Ha!

He was a bit disheartened by the biopsy report. He didn't have much to say other than I thought I'd have longer.

He's been complaining of getting cold easily for about a month which makes sense because he is anemic.

Last night he mentioned he's been having hot flashes or sweats. Could this be the anemia? At dx, when he was flaring with symptoms, one of them was night sweats but I don't remember anything associated with daytime hot flashes/sweating(except maybe when he was on pred).


----------



## Tesscorm

I don't know what the connection is with body temperature??  Stephen's complained for a couple of years now about his body temperature - in his case, he says he feels excessively cold in the winter (even when it's mild) and then very hot/sweaty in the summer.  Although, he hasn't complained about it for months now??  Not sure how it ties in - started quite a while after his crohns dx, so timing seems off to say it's directly related to crohns and also a large time gap to when he started remicade.  Now I can't remember if it started before/after remicade but do remember thinking there was too much of a gap for it to be related.  His iron levels have been good for a while now.  Also looked at his results related to thyroid (I think) and they looked fine too.   Just strange that so many others have noticed issues with their body temperature (or sensitivity to temperature).

As for night sweats - S had same experience as C.  Night sweats when flaring (winter/early spring - so not hot in the house) but noting during the day.  What he feels now (or 'recently') is day and/or night...

So glad he had a good time but, it's a shame he had to come home to this news.  

:ghug:


----------



## Clash

What he is experiencing now is not over night usually in the day time or evening. Air on, the rest of us chilled by A/C and he's sweating. Nothing really overly bothersome as he's only mentioned it. I was just wondering if it might be related to anemia. IBD can be related to some forms of autonomic dysfunction so it could just be that. In fact, his JSpA is too so maybe that.


----------



## Mr chicken

Clash that is what we were told
DS get hold cold rashes etc from JSPA/IBD/autonamic dysfunction


----------



## Clash

Yeah, when C was experiencing tachycardia the GI said, so many reasons- low iron, meds or even autonomic dysfunction due to his CD. I guess I'm going put this up to that.

I have temperature dysregulation due to autonomic dysfunction and it sucks I'm always going the opposite way of the others in my house! Lately since I started working with a physical trainer I've seen improvement in all my symptoms! Woohoo!


----------



## Farmwife

We are talking about the temperature thing on my thread too.
Grace use to be hot and sweaty all the time. Horrible night sweats but since starting treatment that seems have gone away. Now she's to cold.:yfaint:


----------



## DanceMom

A also gets hot when she has a fever.  I know most people feel chilled and shiver with a fever but she is stripping and grabbing an ice pack.  That always baffled me.


----------



## Maya142

We have the same thing with M - hot when she has a fever, but cold at all other times. She's also had really bad night sweats in the last month which we have put down to inflammation.


----------



## kimmidwife

Caitlyn doesn't complain so much of feeling cold but if you touch her arms and legs they are freezing. Maybe this could be from the neuropathies that the neurologist told us occur in people with IBD?


----------



## Clash

So I just wanted to brag on C's GI nurse. She is just freakin' awesome. I had requested a letter for the office of disability at the college and I just received it. It's a great letter and addresses C's issues(when present for JSpA)so well. It covers all the norm and things I didn't think of and then goes on to emphasize that each case is so individual and it is important to be open to the students specific needs. I can't even describe how well thought out and written the letter is.

Still waiting on the rheumatologist letter but I'm not expecting much since she had the nurse call me back and tell me that C has juvenile spondyloarthropathy related to IBD so it's the GI who needs to write the letter since it is CD causing arthritis....seriously I mean his runs independent of his disease so when CD is fine(it's not) and joints aren't(they are) then the rheumatologist should cover how the joint pain affects QOL...sheesh.


----------



## Mr chicken

Glad you got a good letter from the Gi
Sorry the Rheumo isn't being as helpful
Both docs gave Ds good letters specific to each issue


----------



## Clash

C has gotten GI letters before but a different nurse. They were good and fairly inclusive but it was in general terms with CD. The GI nurse C has now asked all kinds of questions and wanted our input. She hit all the generalities but then did great on specifics of C's case and was very inclusive of the JSpA issues and what needs he may have.

We'll see what the rheumatologist letter looks like soon I hope!


----------



## Maya142

We got both for M - from both doctors. However, if you have a really good one from one doctor, I don't see why that would be an issue.

Hope C is feeling ok.


----------



## Clash

I'm not gonna lie, guys I did a lil dance after reading it! Isn't it crazy what a parent of an IBD kid considers victory dance worthy!

C is doing great right now. The whole hot flash thing passed quickly and I really think it may have been just a fluke thing. So still no symptoms, working and playing the summer away! I've seen my oldest who is away at college on the weeekends more than C! In fact me, the hubby and J have an upcoming shopping trip to expand her wardrobe for her upcoming cohort/student teaching. Yes, she thinks she has gdied and gone to heaven with a shopping trip all about her!


----------



## Tesscorm

:lol:  I can imagine my daughter would love the thought of a shopping trip all about her!  :rof:  But, I'm sure you'll have almost as much fun! 

And, so glad all is going well with C!!!! :dusty:


----------



## Sascot

That's great things are going well. Happy shopping, bet she'll have a ball.


----------



## kimmidwife

Always glad to hear good news! Enjoy the shopping!


----------



## Clash

C hado his rheumatologist appt today and things went well. She felt some inflammation  in his 2nd and 3rd fingers on his right hand. But his range of motion was good in all joints. He hasn't had any joint pain since last appt so she felt the humira was starting to do its thing. She said the timing was good because we were coming up on the 6 mos mark and that was when she generally saw humira really kick in.

I took some time to ask about the imaging he had done first visit that the nurse called and said was good. When the doc was telling me about them she mentioned something at the SI joints but other joints looked good. I swear it sounded like she said sutures at the SI joints but I know that can't be the word. She also said it was slight. This was on the x-rays not the MRI. Any ideas?

I should've questioned it but C spoke up right then with his own question and it took us down a different tangent. I didn't even think of it again until we were otw home.


----------



## Maya142

Sclerosis? That's the only word I can think of with S for the SI joints. There could also be subchondral erosions (that's sort of a S).

Can you get a copy of the x-rays and the MRI reports? It's probably a good idea to have them for your record, in case C ever sees another rheumatologist etc.

This is the grading scale:


> Sacroiliitis grading can be achieved using plain films according to the New York criteria 4.
> 
> grade 0: normal
> grade I: some blurring of the joint margins - suspicious
> grade II: minimal sclerosis with some erosion
> grade III:
> definite sclerosis on both sides of joint 5
> severe erosions with widening of joint space with or without ankylosis
> grade IV: complete ankylosis


I believe you either need unilateral grade 3 or 4 or bilateral grade 2 sacroilitis for a diagnosis of AS. Both my girls have bilateral grade 3 (I only know this because they're in a research study) and my husband has bilateral grade 4 sacroilitis.

Glad C is not in pain and is doing well!!


----------



## Maya142

This site might help Clash: http://radiopaedia.org/articles/ankylosing-spondylitis


----------



## Tesscorm

No idea on the S word... but really glad all went well and that humira is doing its job!!


----------



## Clash

Wow I just posted a long post and it disappeared!

Neither of those words but thanks so much for the link its a wealth of info!

Yeah it was a good visit overall and we really like this doc!


----------



## kimmidwife

Glad to hear!!! And it is always good when you find a good doctor!!!


----------



## Clash

I forgot to mention that the letter issue must've been a misunderstanding because when I brought it up to her she was extremely helpful and asked a lot of questions and then had the nurse to call me today to get the letter out and what points it should make.

She'll be calling back this afternoon and I'll ask her about the SI joints. And records but I assumed at least the reports would be available letting by the portal?


----------



## kimmidwife

Clash,
I find not everything is always available on these portals so probably good to get a hard copy.


----------



## Clash

Okay, I'm going to ask this afternoon. Thanks!


----------



## CrohnsKidMom

Scoliosis?  But I'm not sure if one can have scoliosis of the SI joint...


----------



## Clash

No it sounded like sutures. In fact, that is what C heard too as otw home he asked what she was talking about with sutures in the SI joint and could it have been his stitches from the resection. LOL Who knows but I'll ask this afternoon. Why I didn't think to ask when the nurse called this morning is beyond me!


----------



## awmom

Hi Clash....glad you like the doc and it seems like she is approachable which is always good!!  I have heard the word suture as it relates to joints.  I think it mainly relates to joints that don't move much so I am not sure it applies to SI joints.  I hope you get some answers soon.


----------



## Clash

Hey guys. We've been all caught up in readying for college around here. The nurse didn't call back that afternoon and by the time she did I had forgotten to ask what she meant about sutures but I think it must be similar to what awmom stated. I put in my notebook so I'll ask next appt.

C has a follow up GI appt in August. I'm thinking meds won't change (if they are going to) until after next scope which GI said would be late October mid November.

All is well this way, things are just moving along. C has had an altered sleep schedule since dx. Nothing we've done has got it back on track. It is a point of concern as he starts college. Well, he started dating someone a couple weeks ago and she brings him breakfast a couple mornings a week. Needless to say, he is now trying to alter it himself to fit her schedule...ahhh the power of hormones!


----------



## DustyKat

I can’t think of any words that sound like suture that would relate to the SI joint. Suture in relation to bones normally refer to the plates of the skull. Can’t wait to find out what the word is! :lol: 

So good to hear that things are continuing to go well with C!  

And aren’t you glad that I just happened to pop back onto the forum today only to find a statement like this!...



> ahhh the power of hormones!


I won’t tell you what I would call it! :ylol:

Dusty. xxx


----------



## Sascot

Glad things are going well. Dreading the day my son starts seeing someone! Although it does sound motivating, lol


----------



## Pilgrim

Isn't it a relief when they starting dating the "mothering" type!


----------



## Tesscorm

I'm so glad all is going well!!  There must be lots of excitement building around college! 

And, lol, re the girlfriend!  Amazing what they can accomplish!


----------



## awmom

I'm so glad C is doing well, and having a girlfriend always makes things better!!  Know what you mean by the sleep schedule being skewed.  Last year (freshman in college) N chose only classes starting after 10am and preferably later!  Don't think it's working out for this year!!!

Wishing him a great first college year!!


----------



## Clash

So C had his August GI appt. He asked to go on his own and I agreed.

He will be having a scope in december. The rheumatologist had given us a Lab order to go along with whatever the GI ordered since at her visit it was to soon since last labs. The lab was everything the GI would order except she does ESR (SED) instead of CRP (of course since she is keeping up with his JSpA. The GI told C he wasn't gonna order CRP since it is always normal for him and not a good indicator.

Labs just came to online portal. HGB is 10 and his HCT, MCV and MCV are below normal. And where his SED rate was around 7 it is now 18 (high end of normal is 15). His joints have not been giving him any trouble at all.

I'll be calling both docs in the morning. His college classes start tomoroow.


----------



## Maya142

Way to go C for going on his own (also way to go Clash for letting him -- M's not going to any doctors on her own until she's 25  ). 

Sorry to hear his ESR is high and hemoglobin low - really was hoping Humira would be his miracle . Does his GI have a plan for what's next, if Humira fails? 

Hope C enjoys college!


----------



## Catherine

Sorry to hear that he has anemia.

Did they run Ferritin, Folate and B12?


----------



## Clash

Maya142, it was hard to just let go and let him be the one in control like that. He did a fabulous job and covered everything I would have. I didn't feel much apprehension though since I knew this was just a regular scheduled checkup and he was having no symptoms. I doubt I'd have been as calm had he been experiencing issues. 

I don't know what to think about his SED rate. I am calling both docs today. He has no joint issues. He also has had no CD issues but I've noticed a spike in bathroom visits. He said all was normal, no blood, mucus or anything. I guess wed need an fc to determine but he already has a scope coming up in december. GI did say he had gained 3 lbs and that he was pleased with C's appearance, that he "looked good". Asymptomatic sucks and I feel we never know what is truly going on!

Catherine, we already knew he had anemia, last time his HGB was a tad low and all other numbers on the low end of normal. He is on iron but I wonder if we shouldn't try an infusion. I may ask his GPS to run ferritin and other numbers. 

His rheumatologist thinks it's anemia of chronic disease. I think his GI feels the same.


----------



## Maya142

We did iron infusions and they worked MUCH better than supplements for M. She felt a lot better after the infusions - much less tired, less pale etc.

Sending hugs!!


----------



## Clash

I'm going to push for the iron infusions. I have a feeling the SED rate may be depicting CD activity[although blood inflammatory markers have never been good tools for him in the past) because when his JSPA is flaring we have joint pain. I'm assuming 18 isn't an astronomically high SED for either disease, right?


----------



## awmom

Gosh Clash I'm sorry about the concerning labs.  Are his anemia markers much changed from the last ones?   I wish they would do the labs BEFORE the doctor's visit so these could be discussed during the appointment! I do hope you get some answers soon.   Wishing him a great first day of college!!!!!


----------



## Clash

The HGB isn't much lower than last time and the other markers have dropped from low normal to up to 6 points below normal for each marker. I guess I'll know more after talking to the docs. 

Thanks guys. Sometimes, even though we should be old hands at this stuff I still feel frustrated and confused at labs that are off. I feel blessed in some ways that C has been asymptomatic during flares I also feel we have little to go by in the way of determining what is really going on.


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## Maya142

It wouldn't hurt to ask for an FC - at least you'd have some info about what's going on in there since C is asymptomatic.


----------



## kimmidwife

Sorry to hear. I think it is a good idea to get an FC now even if he has scopes scheduled for December. December is still al out four months away.
Definitely ask about the iron infusions. They helped me immensely when I was pregnant and couldn't get my iron up.


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## crohnsinct

Oh Man!  Sorry about those labs!  President of the FC Fan club also says pull a test.  Can't hurt.  :rosette2:


----------



## pdx

I'd also ask for an FC.  But just so you know, at our lab, under 20 is the normal range for SED rate.  Obviously a rising rate is concerning, but 18 is still relatively low.


----------



## Jmrogers4

I vote for FC also, especially if that is a good indicator.  Since he's asymptomatic I never trust labs


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## Clash

I've talked with the nurse about having fc done. She is going to run it by the GI. She also said that since his scope biopsy did show active disease then an elevated inflammation marker may be all we need to determine the humira still isn't getting the job done and needs to be adjusted regardless of whether the JSPA or the CD is the culprit. Haven't heard from the rheumatologist yet.


----------



## Catherine

Clash said:


> His rheumatologist thinks it's anemia of chronic disease. I think his GI feels the same.


Iron infusion do not work in Anemia of Chronic Disease unless there is concurrent Iron Deficiency Anemia.

The treatment for ACD is to treat the chronic condition.


----------



## DustyKat

Definitely have the doc run Iron Stores to double check where C is at. 

Low Hb and low ferritin will point to iron deficiency anaemia. 

Low Hb and a normal/high ferritin will point to anaemia of chronic disease.

As Catherine has said ACD stems from a different aetiology to iron deficiency anaemia. Rather than iron being depleted due to direct causes such as bleeding, diet, malabsorption, etc in ACD the iron is there but the pathway to it being released and circulated is broken. Hence why iron supplementation doesn’t work. 

Dusty. xxx


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## Mehita

What's his Humira dose/frequency again?


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## Clash

He is still at the regular schedule of every 14 days for humira.

I'm thinking either way he'll be moving up. The rheumatologist had already mentioned it at his first visit. She said that with her patients like C she has found the most aggressive approach best. But at that time we hadn't had scopes to see if C's Crohns was flaring so we opted to wait. 

With the GI, at the time of the scopes he felt there had not been enough time on humira to warrant the up schedule so we were holding off. On the other hand he also has questions whether C may just not respond to tnf blockers in relation to his CD.

I think one of them, or both, will be wanting the schedule increase. Ughh


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## Maya142

I know the weekly shot is a pain but we saw a HUGE difference when we moved to weekly shots for both my girls. Of course, they aren't asymptomatic (quite the opposite) and since pain increased around day 6 or 7, they knew the weekly shot would help and that made it easier. 

Fwiw, both of them had failed other Anti-TNFs (Remicade, Simponi, Enbrel) for their AS but Humira worked for both when we did weekly shots (with MTX).

Hope C is enjoying college!!


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## my little penguin

Same Ds moved to every 10 days and upped mtx since every 14 days wasn't enough .

Not any different from a getting meds stand point .


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## Clash

So rheumatologist said to follow GIS instructions whatever they may be since she felt it was CD related (increased SED).

I asked GI for fc and blood work for ferritin, b12 etc. He agreed. He feels like the fc is going to come back high because he feels the SED is a reflection of the active disease seen on pathology of scope. We will discuss again once all labs are back.


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## Tesscorm

Ugh, this just sucks!  I'm so sorry Clash! :ghug: (And, sorry I'm so late on this.)

FWIW, S's SED was as high as 35 before remi - no symptoms either (when he was showing symptoms, at dx, Sed rate was 63).  Our lab's normal range is 1-10.

Hope bumping up dosage will do the trick and this will be the easy fix!! :ghug:

And, I totally know what you mean about being grateful of asymtomatic during flares but feeling like you're always in the dark.  

Hugs :hug:  I hope you get the results and onto a new path quickly!

(Also, hoping all is going well at school so far!! )


----------



## Clash

GI nurse just called. C's iron numbers are all low, definitely iron deficiency anemia and low enough he needs a transfusion. We still have to do the fecal calprotectin test. We want to do it Sunday evening or Monday morning. I forget can we put the sample in the refrigerator if it is Sunday evening?

Doc also wants him to start entocort after he is finished giving his fc sample on Sunday/Monday. So we pick up that px today. I don't know how C is going to feel about a steroid, he hated pred and it didn't work for him, I mean no improvement. Even though I know the differences between pred and entocort and why it could make a difference with less side effects, I know C is going to be a hard sell.

I so hate this is starting right at the beginning of college!


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## kimmidwife

Very sorry to hear.


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## Clash

Results
Iron, Serum Labcorp	40 - 155 ug/dL	14
IRON SATURATION LABCORP	15 - 55 %	4
FERRITIN, SERUM LABCORP	16 - 124 ng/mL	3

He's been on niferex for awhile now so I guess inflammation kept it from absorbing?


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## Chester31

My son sounds very much like yours Clash. He generally has no obvious symptoms. He is on weekly Humira and methotrexate and is waiting for surgery to remove a small bowel stricture. He's managed a week of sixth form and is now back in hospital waiting for his third blood transfusion in 6 months. Fingers crossed you get things back on track soon.


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## Maya142

Really sorry to hear Clash! At the beginning of college too 

My daughter's Ferritin was about as low as your son's a couple years ago. We tried iron supplements for a while but they didn't get it up so then we went to iron infusions. They weren't that long (1 hour ish?) and helped immediately with fatigue. She had 4 or 5 infusions and has never needed them again (so far). I hope C's iron starts to increase soon.

M LOVED Entocort - it helped her abdominal pain and she had NO side effects at all! She had lots of side effects with Pred - moon face, insomnia, hungry all the time, moody -- so it was a really nice change. I would try to convince C to at least try it. 

That said, if Pred didn't work for him then I can understand why he'd be wary of steroids.


----------



## Clash

I'm hoping that since entocort is not systemic and targets the GI tract that it will be more helpful. C hated pred because in his GIs words C got all the nasty side effects with none of the benefit. So I feel like if I can get it across to him there should not be bad moonface and all the other stuff he'll be more apt to be openly give it a chance instead of the grumbling, ornery, begrudging battle that can sometimes occur.


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## Maya142

Tell C that M says it's her "favorite steroid" even though it doesn't help her joints at all 

Really hope he doesn't have side effects. I remember M's GI saying she'd only had one patient who had bad side effects in all the years she's been prescribing Entocort.


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## pdx

My daughter also had no side effects from Entocort.  She also had great results from iron infusions back in February.  She had a lot more energy after the infusions, and her iron numbers have stayed up since then.  

Good luck with everything, and I hope that all this doesn't interfere too much with the start of school.


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## crohnsinct

Check the treatment sub forum on Entocort and Prednisone.  Pretty much everyone says Entocort is way better than prednisone.  T has had a pretty east time with Entocort.  Just an increase in headaches BUT she has always had a problem with headaches so se is prone to them.  Plus prednisone may have given her even worse headaches so who knows.  

Docs say Entocort works pretty fast but according to the folks in the threads here, they all say 4-6 weeks.  Also has less success than prednisone.  The jury is still out on whether or not it is working for T.  But I think it is worth C giving it a shot.  Would he do EEN do knock out the suspected inflammation. 

Is he getting a blood transfusion and starting iron infusions?


----------



## awmom

Awww Clash, so sorry to hear all that is going on, especially right when school is starting.  Regarding the fecal samples, we have done it different ways, depending on the lab.  This last time we were instructed to put one sample in the freezer overnight and the other at room temp.  Twice it has been an overnight thing, so I would imagine it's fine to get the sample the day before.

N was put on entocort when he was first diagnosed for about 4-5 months.  He was also very anemic and was given iron supplements which did not help at all.  He had none of the side effects on entocort that he later had with prednisone, and it did help with the pain and also his CRP and sed rate started coming down. the problem is they didn't put him on a maintenance med along with it!

At this age they can get grumbly anyways, but adding all this medical stuff to their agenda can certainly take it up a notch.  I hope he heals quickly and that it doesn't interfere too much with the start of college.  Sending warm thoughts.


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## Clash

Thanks guys for all the replies! 

CIC I think just aneed iron infusion.

awmom we have one container and they said to make sure to put the sample in the fridge if it is overnight so I guess I'll go with that. He usually goes when he first gets up so I could do it Monday but our luck he won't go that morning!

I just informed him of everything and he gave the non verbal head bob acknowledgement. Just gotta love this age!


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## Sascot

Sorry to hear that. Hope the infusion makes a difference. No experience with steroids.


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## Pilgrim

I have a lab form for FC here and it says to put it in the fridge if it can't be mailed. I'm keeping our sample in there for 3 days. 

I was told at one time it is shelf stable for 5. 

He sounds like he has a good attitude about this. I hope the transfusion helps him and things get easier right away.


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## my little penguin

Stable for 5 days means that your lab has time to ship it out to process 
So holding it for twenty four hours is ok but I would check with the lab as to whether they permit you to hold it for three days


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## Pilgrim

my little penguin said:


> Stable for 5 days means that your lab has time to ship it out to process
> So holding it for twenty four hours is ok but I would check with the lab as to whether they permit you to hold it for three days


Sorry should have clarified that it took so long to get lab kit that we are holding sample for three days and delivering in person as per Gi request. Keeping it refrigerated.


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## Catherine

The results look like concurrent IDA and ACD.

The low ferritin level confirms there is IDA but all other iron numbers being low suggests ACD.

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=192


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## Clash

C had his iron infusion on Wednesday. It took about an hour. The nurse that oversaw the infusion said that if he was going to feel a lift in energy it would be a couple days. Unfortunately, it was done on the same day Chase started entocort so I guess he could probably experience a side effect of energy from that.

C wasn't keen on the entocort being started now. He was concerned that it could affect the results of the colonoscopy and wouldn't be a true indication of humira was working or wasn't or if the dose needed to be adjusted. He was also concerned it would lead to another colonoscopy some time after coming off the entocort if the humira wasn't working or no dose adjustment. He just feels that adding one med at a time and querying it's efficacy is a better method to get a truer picture of what is and is not working.


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## Tesscorm

I agree with him and I'd have the same questions/concerns.  Sorry, I've forgotten - when is his scope?

Are you going to pass on C's questions to GI?  Because I do think it's a valid question.

(BTW, I definitely think he's ready to join the committee! )


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## Pilgrim

Clash said:


> C had his iron infusion on Wednesday. It took about an hour. The nurse that oversaw the infusion said that if he was going to feel a lift in energy it would be a couple days. Unfortunately, it was done on the same day Chase started entocort so I guess he could probably experience a side effect of energy from that.
> 
> C wasn't keen on the entocort being started now. He was concerned that it could affect the results of the colonoscopy and wouldn't be a true indication of humira was working or wasn't or if the dose needed to be adjusted. He was also concerned it would lead to another colonoscopy some time after coming off the entocort if the humira wasn't working or no dose adjustment. He just feels that adding one med at a time and querying it's efficacy is a better method to get a truer picture of what is and is not working.


Smart and thoughtful young man.


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## my little penguin

Yeah that ^^^^^
Same concerns ....

I would ask the Gi 
When is the scope again ?


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## Jmrogers4

Agree with C on this one.  See he does listen even through the noncommittal head bobs.


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## Clash

The scope is in December so probably around the time we are tapering off the entocort. 

There was a scope in August clean visually but active disease on biopsy. At that time C had only been on the humira barely 5 mos so the GI wanted to wait a bit before changing anything. 

The GI ordered an fc, we sent out this Monday. The GI  has said he expects it to come back elevated since his SED was slightly raised and those markers have never changed from normal when in a flare. At that time he may go ahead and adjust C's humira dose. He has been out of town for awhile, first a conference then an overseas trip so the GI nurse is relating our conversations as well as his. We'll be meeting with him when the fc comes back.

I honestly think the GI chose entocort because C has made it plain how much he dislikes the humira injections. It was at his last appt. when he went alone so I don't know exactly what was said but I don't think C was thinking what implications that might have on med if a flare occurred or maybe he did, idk. But I think if the fc proves the GIs fears true then the dose will be moved up regardless.

I do see glimmers of knowledge and forethought in C'C's acceptance that he needs to master his own health advocacy but goodness knows I see other actions that make me think...ok is this child even thinking!


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## Maya142

Whoa, good thinking C! You've taught him so well Clash!! Glad the iron infusion went well - we also thought they were very easy and saw a difference within a day or two.

Would C add lidocaine to Humira? My girls hated Humira too but not enough to do anything about it (teens are confusing). But if it helps him go to weekly shots when that becomes necessary, it's worth trying.


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## Clash

Maya142, I've talked to him about the lidocaine but he'said been the same as your girls and yep it confuses me.

I really wish I had gone to that last appt. I do feel like C was probably just speaking his mind of his dislike of humira and I have my suspicions that convo maybe why the doc added entocort instead of immediately upping the humira. I'm not certain, but he has never suggested entocort in the past and between me not being at that last visit, the GI being unavailable and C's anemia and SED rate coming to light while he was gone, I'll feel things have been a bit messy confusion. This is not something I feel is any one person's fault just a perfect storm of things occurring.


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## Tesscorm

Yep, Murphy's Law...  should've been smooth sailing at the apptmt and, like you said, just a perfect storm of things.  But, sooner or later, we will all have to go through this transition and there will always be a storm brewing.  I guess our next step is to advocate for them at arm's length by helping/guiding them as they advocate for themselves.  (Spoken by the mom going to the GI apptmt Monday morning! :lol

And, re the lidocaine, while S isn't on humira, I'm sure he'd respond the same way!


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## Clash

LOL Tesscorm, I think I'll be at the next appt.

My 1st cousin has a daughter that was dxed with JRA(now called something else?) when she was younger. Since she was 17 or 18 the girl has handled all of her appts. since she attends college in another state. So her Mom isn't nearly as clued in as I have been with C. It was so disconcerting talking with her because although she has accepted her new role (daughter is 21 now) it seemed so odd to me because I'm still so connected to C's care. Won't be much longer though so I guess I should prepare myself! Yikes lol!


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## Maya142

:lol: M is in another state  (just an hour away) and I'm planning on going to appts. till she's 25 !!

My older daughter, S, does go to most of her rheumatologist appts. by herself but it's so much easier to send them on their own when they're doing well...with M, there's always one disaster or another (though I suppose she'll have to learn how to deal with them sooner or later).

I'm not sure who transitioning to adult care is harder on -- us or our kids!!


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## Tesscorm

To be honest, I was planning on sending S to this apptmt on his own.  There are no issues, so I thought this would start to be a good start to this transition.  BUT...  something's come up (not expecting anything serious tho) and I want to be there.

If you remember, a while back he started complaining about chest pains.  This started in about July.  He did see his GP about it, when he was also complaining about that 'rash' and GP thought it was muscle strain.  When it didn't go away, he went to a walk-in, again that doctor thought muscle strain.  But, he kept complaining about it...  I mentioned it here and costachondritis was mentioned and my thought was, if it doesn't go away before, we can discuss it with GI in September.  Then, last week of August, S was still complaining and saying he was worried because it was his chest, what if it was his heart, etc.  Now, seriously, you guys know I'm not a neglectful mother :lol: but, for some reason, I wasn't that worried.  (Maybe because I'd gone the whole 'worry' roller coaster with the rash that turned out to be jock itch and I can only worry about one thing at a time?? :facepalm  He was concerned enough that he went to ER on his own (he wanted to 'know' before leaving for school).  All was good until ER called us later that evening to say there 'might' be inflammation on his heart and were referring him to a cardiologist.  Okay, now I felt like sh-t for not paying attention and, of course, was immediately worried sick!  Contacted GI and, maybe he pushed the referral, because we had apptmt with cardiologist 3 days later (and then THAT worried me too!  Why the rush?!?!? :yfaint.  So, off to cardiologist we went...  all is good with his heart! Whew!!  But, he couldn't explain chest pain.  Also thinks costochondritis is a possibility with his crohns but thought might also just be muscle strain taking time to heal (because S continues to play hockey, adding more 'strain'), suggested we follow-up with GI and/or GP.  So....  now, I want to follow-up and figure out what it is...  will be asking re costochondritis (which, S has researched and, from what he's read, says he thinks that's what it is too).   BUT, if not for this issue, I would've sent S on his own this time! 

However, there is one other thing...  I've been slacking in getting lab results after each infusion (as all was stable, thought I could maybe just contact hospital once a year and get year's records)...  but, with this chest pain, I wanted to see if there was anything 'off' and requested a copy of his last labs (end of Aug).  There was no CRP or ESR!  There was a long list of items that could be tested (maybe a 'standard' list) with quite a few showing no results.  CRP and ESR were included in the list but there was no result next to them (so can't be on a separate sheet that nurse forgot to send)???    So, now I also want to know why they weren't tested??  Any ideas on what else GI would look for re inflammation?  All his other numbers were good.


----------



## crohnsinct

I think it is just good advice for people managing a chronic and somewhat complex issue to always bring someone to heir appointments.  Many of the adults here bring a loved one with them. This was recently tweeted by an adult GI: 

My patient: "I'm feeling fine." His wife: "No, he is not!" His colonoscopy: severe colitis. I think spouses are very sensitive biomarkers.

That's my story and I am sticking with it. As long as my girls live anywhere near me I am invading their appointments.  Incidentally, at O's next appointment I will be there for the opening questions, leave for the exam and then be there for the wrap up...small steps!


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## my little penguin

Same here
Anything that is chronic - someone else needs to be there
Once Ds has significant other then they take over 
But I have even seen with dh 
At one point the kids and dh saw the same allergist 
Dh would always say -"fine" regardless of how is allergies were doing
Not productive at all


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## awmom

This is such a difficult situation both for the kids, who want to be independent and who, having learnt from their best advocates feel  able to think analytically and address their concerns, and for the parents, who, from years of experience know that the medical profession is falible, and that it can be difficult to question, or remember what we have been told or what we wanted to say....etc.  I do think that we have to respect if our kids want to see the doc by themselves, but having said that, if they will allow us, it is beneficial to go even as a second pair of ears.  

I see C's point with doing one med at at time, and I can certainly understand the whole not wanting to do another scope any time soon (ha...remembering our fiasco with the scope!).  I suppose that, because C was so anemic and inflammatory markers were creeping up, GI wanted a something to nip this in the bud quickly (not sure how fast humira works). Once he is off the entocort and they have adjusted the humira  can they monitor things with his labs, and if things are looking good maybe postpone the scope a bit to see if things are holding up?  Just a thought. 

Gosh Tess, lots going on in your neck of the woods!!!!  What a relief that there were  no heart issues!!  Regarding the labs, the only inflammatory markers I know of are ESR and CRP.  It's a good thing you checked.....  At least if they haven't been doing them they will from here on out!!!  This disease is so complicated and unpredictable that I feel sometimes I am just waiting for the other shoe to drop......I imagine our kids also do at times.


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## Maya142

> My patient: "I'm feeling fine." His wife: "No, he is not!" His colonoscopy: severe colitis. I think spouses are very sensitive biomarkers.


I'm going to use this story for many, many years!!

I think the happy medium is what CIC said, some private time with the doctor but someone there for the rest of the appt (M's GI recently asked her about drinking and told me "not to listen" to the conversation but I could tell M was uncomfortable, so I left).

Incidentally, when my husband goes to his own appointments, NOTHING comes out of it - he is MUCH worse than my girls!

Tesscorm - what a scary experience!! M's GI once said testing ESR and CRP every 4-6 weeks (when M was on Remicade) was unnecessary from an IBD perspective (we continued to do it because I said M's rheumatologist wanted those numbers !!). Perhaps that's what S's GI is also thinking?


----------



## Clash

awmom, C looks forward to scopes, he says it's the best sleep he's ever had LOL. So he's not wanting to put the scope off at all just was concerned the start of entocort may give a scope result that could change quickly after tapering off. 

If C wants me to go to the next appt then I'll definitely be up for it. But I also don't want to handicap him in learning how to effectively advocate for his health.

He is obviously listening to some of what I say...I just wish it extended to...pick up your clothes, put your dishes in the sink, lift the seat, don't wear those shorts again without washing them and just recently please get your socks, underwear and shoestrings off your ceiling fan.


----------



## Maya142

> pick up your clothes, put your dishes in the sink, lift the seat, don't wear those shorts again without washing them and *just recently please get your socks, underwear and shoestrings off your ceiling fan*.


:rof: oh my gosh, so funny!


----------



## Clash

I know my husband and I were just saying the other day that the things that come out of your mouth wheen dealing with a teen boy would make a hilarious stand up routine!


----------



## crohnsinct

OMGosh!  Clash that is hilarious!  Sadly not much better with teen girls.  Earlier today I was heard saying, Please put a bra or a cami on because your boob is hanging out of that sports tank top! Like literally full on hanging out!


----------



## Maya142

My girls hang bras on door knobs and not just their bedroom door knobs -- ANY doorknobs. Why they take their bras off in odd places (family room??) is a question I still have not found an answer to.


----------



## Tesscorm

S is the same as far as leaving things around!  We've told him, numerous times, that the entire house is not his closet!  S likes to take off his pants wherever he may be, lounging in his boxers!  On more than one occasion, I would find S scrambling with sofa blanket wrapped around his waist, like a toga!, because one of Em's friends had come in and S's pants were in some other room! :rof:  He's gotten better but...  by just a bit! 



> I feel sometimes I am just waiting for the other shoe to drop......I imagine our kids also do at times.


  I'm starting to feel this is very true, as far as S goes.  At times, with the rash and chest pain, S was very distraught and worried; sometimes overly so it seemed to us.  But, I think it's like one bitten, twice shy...  he's already been dxed with a serious illness, why not again?   It's not that he worries about everything and anything, more that he worries about the serious possibilities if anything comes up.  Not much different from us, when we immediately fear the worst.


----------



## Clash

So as usual C keeps us playing the guessing game.

His FC results came back today. We always use Labcorp who has had a Normal Reference Range of <50. So I always make sure we use Labcorp to keep the NRR the same for consistent record keeping. So this time, made sure we used Labcorp, result is on Labcorp site yet reference range is now 0-120ug/g. So odd.

Anyway, great news is C's level was 54! I'm taking it and I'm doing the fingers in the ears na na  na na action for anyone who brings up the possibility that small bowel location of disease could lead to less accurate results.

Who knows if we should be on entocort at this point. I mean he did have active disease at the cellular level on scope in August and he is dealing with some iron deficiency anemia. 

So at this point all I can deduce is 
Just keep swimming just keep swimming.


----------



## Maya142

Woohoo! Let's just assume this is great news until we hear otherwise 

Fwiw, M had iron deficiency anemia BEFORE she was diagnosed with Crohn's. We checked her FC at the time and it was only 78 (at Labcorp, when <50 was normal), and so we didn't scope. Her GI and hematologist were totally confused about what caused the anemia.


----------



## Sascot

Great news on the FC. Anaemia is an odd one. We struggled to bring it under control even in remission


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## crohnsinct

Anemia is a very complex beast.  It is mentioned often here and I know so many other parents who have kids without a chronic illness who fight it daily.  I just wish answers on anemia were more concrete.  I am going to send you a paper I just read and there was a discussion here a bit ago,  will try to find. 

FC - take your fingers out of your ears...the girls' doc and I talk about FC a lot.  His feeling is, if FC has shown to be a sensitive biomarker for your child in the past it will continue to be regardless of disease location, surgery etc.  He said overwhelmingly with his patients FC is a good marker, small or large intestine. The only thing he may find with small bowel disease is that the numbers do not jump as high or dramatically but in a diagnosed patient with a history of FC being a sensitive biomarker in his book normal is normal.  

Now...I am a fan of under 50 but there are several  studies recently that are starting to quote 100 or even 150 as a cut off to determine risk of relapse.   They are still using 50 for diagnostic reasons but in a diagnosed patient they are not worrying much until the numbers start climbing over 150.  

Of course this is a little reassurance for me considering O had inflammation show up on biopsy and an FC of 154 but that is when I stick my fingers in my ears and sing a long with you.


----------



## crohnsinct

Here is the paper 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540708/


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## kimmidwife

Clash,
That is really confusing! Maybe you need to call the GI to discuss? It is a good question whether he needs to be on entocort or not.
Anemia really can be a puzzle.


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## Clash

I spoke with the GI nurse. We did our little happy dance over the phone about the fc result. I asked about the entocort since the result was low and since it may not give us a clear picture on scopes.

The GI gets my concerns. He is aware that the scope could look better due to entocort and not humira. But he thinks the fc(taken before starting entocort) is promising. His thoughts on entocort were since scope(in August) did show cellular inflammation then he felt the two main possibilities were humira hadn't been on board long enough (it had been right at 5 months) or it was going to take a dose or schedule increase. He chose entocort to give the humira more time and felt that the fc result(before entocort) was a good indicator that hopefully the humira was starting to really do its thing (all this has been translated from medico speak to mom speak). If the entocort does in fact affect scope and fc rises, symptoms present etc after scope then we will then up the schedule for humira and follow closely to ensure humira is working at all.

Oh and had C's SED rate been normal(after August scope before FC level) then he probably wouldn't have added entocort but that coupled with the anemia shown at that time made him act.


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## Maya142

Sounds like a good plan! Fingers and toes crossed that Entocort works like magic and he doesn't have to increase Humira. 

How's he doing on the Entocort? Any side effects? Does he feel better at all?


----------



## my little penguin

Not liking the plan
Steroids would clear any inflammation caused by humira not working
Why not bump the scopes to this week if he needs the steroids to act now
Out Gi has done that more than once so he gets a clear picture otherwise the scope is pointless


----------



## Clash

Maya142, no side effects yet! 

I had the time frame messed up. Scope was in June so at that time only 3 months on humira which GI felt wasn't long enough to up dose.

I think with the fc being 54 that the humira is doing its thing now or at least that is what I hope.

MLP, C wouldn't agree to a scope during first semester classes. He wanted it scheduled for over Christmas break to avoid missing classes. He has made it clear to me and his doctors he does not want to miss class for appts, labs or testing. It might be different if he was symptomatic but being asymptomatic does affect his decisions on this, I think. So we do have to follow his lead on this and make the best decisions within these circumstances. I feel if he was symptomatic then his views would change but no sense in banging my head against that wall.


----------



## my little penguin

Ok that's makes more sense
It's not the Gi waiting hence the steroids to stop the damage /flare if possible without knowing the complete picture 
But C wanting things to not interfere with being an adult ( I get it much easier when they have little say  )
You did explain to him even though he doesn't feel symptoms the objective evidence from his labs etc... Are showing damage is happening ( even minor damage )
So waiting on the scope when it's more convenient for his schedule doesn't mean good disease management on his part.

I would discuss with C and Gi whether the scope was even worth the risk (provided his numbers improve ) since if the steroids are doing their thing your not going to see anything and you still can't say if humira is working


----------



## Maya142

Ok I have a question - isn't it possible that the Entocort will give C the "boost" he needs to go into remission? And then Humira would maintain it? Just curious. I thought steroids could induce remission but I may be totally off.


----------



## Clash

MLP, that's the other thing, the nurse said he would have the scope either way as a follow up on the surgery anatomosis site. I don't remember anything being wrong with it other than the GI mentioning redness I thought it was doing well at last scope visually? C and I have been under the impression this scope was solely due to the inflammation showing up on biopsy but apparently not. Which made some of our concerns and questions void really.

Maya142, yes that's what the GI said. There was really no harm in adding the entocort since he didn't think the humira had had long enough even at the anemia/SED result 18 time. If at the scope there was no inflammation  but then the next labs/fc showed issue we'd up the humira and follow blood work monthly.

Now my questions are an FC of 54 is great I think but if the inflammation were still only seen in biopsy would that even raise the FC?

The rheumatologist felt his SED rate was GI related since C wasn't having joint symptoms and he had great range of motion but can that be certain? 

If his inflammatory markers were normal(and they have been except this on slightly raised SED) and his fc was normal but he still had iron deficiency anemia with low ferritin on next labs would that be enough to trigger upping the schedule of humira?


----------



## Clash

I just went back through my notes and the biopsy report showed inflammation in the terminal ileum and at the anatomosis site. So maybe the GI nurse was just saying because there was cellular inflammation at the anatomosis site there would be another scope to check something about the scar tissue and some medical word?

I don't know. It's so hard when the convos have a go between. Even though C's GI nurse is freakin awesome I'm sure things get lost in translation both ways. Uggh.

I wish the fc had been at the August blood work because I don't think entocort would've been added had we known his fc was 54. We literally went for iron stores test got the results the next day along with iron infusion order then turned the fc in the following day and started the entocort the day after that because we all though fc would definitely be high. And then a week later we get the result and it is 54.

And the iron I fusion and entocort was started about the same time so even though C is saying he feels more rested and has more get up and go when he wakes up I have no idea if ithe is a result of the iron infusion (it happened about the time the nurse said it would) or if it is the entocort. C sayes it's not jittery energy so he thinks it's the iron. But I thought entocort didn't cause the jittery energy anyway?

So once again I'll just say Crohn's sucks!


----------



## Maya142

> The rheumatologist felt his SED rate was GI related since C wasn't having joint symptoms and he had great range of motion but can that be certain?


In our experience, when there is joint inflammation, there has been pain, stiffness or swelling but I have heard of kids being totally asymptomatic, yet having visibly inflamed joints. Asymptomatic sacroilitis is actually common in kids with JSpA. I'm not sure it would raise inflammatory markers though - I have no experience with that because my girls' are never raised!

Often kids with JSpA don't have raised inflammatory markers at all though and given his history of Crohn's, inflammation seen on the biopsies plus the anemia, I'd guess in C's case, it was the IBD and not the JSpA.

Wanted to add that my daughter felt the same with iron infusions - much more energy, much more willing to do things. It made an immediate difference. With Entocort she felt a decrease in abdominal pain and diarrhea/constipation (I can't remember which she had at the time) but in her case, I don't think it made a difference to her energy level.


----------



## my little penguin

I tend to agree with Maya 
JSpA lots of stiffness pain swelling
Caused Low ferritin for Ds

I vote crohns 

Forgot about his last scope and surgery results


----------



## crohnsinct

Clash: I agree on the FC issue...that had you had that result Entocort wouldn't have been added so I am wondering why he is keeping him on it given the nice low FC. 

O had scopes that visually looked beautiful but inflammation was found in the biopsies.  We pulled her FC and it was 154.  Not crazy high but slightly elevated.  So for her I am guessing cellular inflammation does show in FC.  BTW - we did nothing about it.


----------



## Clash

MLP and maya142, I notice you guys keep including stiffness in the symptoms. C:s back is always stiff most often in the morning but sometimes if he's laying around during the day it will be stiff too. The stiffness level comes and goes, at last rheumatology appt it was very low level stiffness since mid August it has been back to his normal level.

CIC, I thought he might pull the entocort after the low fc as well but I guess the low ferritin, slightly raised SED was enough for him to just let run a course?

I worry worry worry bUT honestly C isn't too worried now. He just got promoted to supervisor at his job he is maintaining As in his classes and he spends his free time with all of his college buddies downtown (yikes) or at his gf house. Ahhh to be young again!


----------



## Maya142

Clash, that is absolutely classic JSpA/AS -- stiffness in the morning and stiffness with inactivity. 

In my older daughter's case, the stiffness has persisted even though her AS is under control - last MRI showed damage but very little active inflammation. I don't know if the stiffness persisted because of the damage or if there is always some inflammation, but in both girls' cases, it has never gone away. Both do have damage to their SI joints and hips, especially M, so that might be why. 

My husband has also been in remission for years and years and does still have stiffness in the mornings. 

So I guess all I'm trying to say is that a certain amount of stiffness is normal for JSpa/AS kids, though of course, every kiddo is different. It certainly gets MUCH worse when my girls are flaring.

Clear as mud, right?!


----------



## my little penguin

Same here on hands knees and ankle/heels
Stiff every morning worse without activity 
Jumps to a whole other level when flaring 
Ds gets to where even his teeth hurt 
Everything hurts during a flare and moving looks like he is 80 including his back /hips .


----------



## Clash

Yeah C:s normal level of back stiffness has him hobbled over in the mornings. We've made sure at each appt we tell the rheumatologist so I assumed it was just something that occurs with JSpA since she didn't make a fuss over it.

C says that his wrists don't get stiff so much as aches but still it improves with activity so part of the same thing. He does say after a busy day on his job his wrists will be sore.

Now that he is at college he has free access to their wellness centers which has gym, indoor pool, and even physical therapists if he so chooses to utilize them again. It's a different group but his px is general. He's hoping to get involved there when he gets settled in to his new schedule.


----------



## Catherine

As I see it fc can give a false low but not a false high.  If as the stool moves down the bowel it misses the spot where the inflammation is the fx will not be raised.

My believe is Gi using entocort to treat the anaemia.

When we had our surgeon opinion with no symptoms other than anemia.  It was mentioned if the anemia wasn't able to be corrected with medication it would worth considering removing a 10 cm section of bowel.


----------



## FDK80

Hi there,

I started taking Humira 2 years a go and it did change my life, what a med that is! I am grateful..

Just one thing to point out, lately my skin starts inching me! and it turns that i have now what doctors call "LICHEN PLANUS"..

I'm not so sure if this has to do with Humira of Crohn's it self.

any Idea?? don't underestimate any info. pls


----------



## Clash

Okay gurus I've got some questions for you guys and you always give the best experience!

1. So C had been asymptomatic for so long that a couple symptoms have us wondering. C had been going to the bathroom as soon as he wakes up, a bit mushy and a little mucus. He's increased to maybe 4xs a day and some of them are urgent. The only thing that has changed is he had been on a chicken noodle soup/grill cheese run. He eats it all the time so could soup cause this?

2. He had that iron infusion 2 weeks ago and the nurse said we'd run iron panelson 6 weeks from that infusion. In the mean time he takes his px iron. If he is low again do you think I could request a couple of iron infusion for a couple months? C really does think it helped with energy but he things his iron must be dropping again due to fatigue.

I've asked him if the bms feel crohnsy and he says not really that he wonders if he just isn't dedicating enough time in the morning. Ha!


----------



## Maya142

> 2. He had that iron infusion 2 weeks ago and the nurse said we'd run iron panelson 6 weeks from that infusion. In the mean time he takes his px iron. If he is low again do you think I could request a couple of iron infusion for a couple months? C really does think it helped with energy but he things his iron must be dropping again due to fatigue.


Did he only have one infusion? M had five I think, over five weeks. Do you remember how low his ferritin was? In her case, she didn't tolerate iron supplements well and her iron levels did not increase with them, so we really had to go to infusions.


----------



## Maya142

Also, would he be willing to stop the chicken noodle soup to see if his BMs go back to normal? It would probably be the easiest way to tell :lol:


----------



## Clash

Yep he only had one infusion. His hemoglobin was only slightly low but ferritin was really low. He had been on px iron pills but apparently they weren't working. The GI nurse said he would get the first then they would test in 6 weeks. So if that's low I want infusions regularly for awhile.

Yeah I think I can talk him into a new obsession just to see if it's related to the soup. I hope it is.


----------



## Maya142

M's ferritin was also very low and her hemoglobin a bit low --  it was 9. something I think. I wonder why they automatically scheduled multiple infusions for her. We did do it through a hematologist and not her GI - maybe that's why?

Anyway, good luck!! I think several infusions make a lot of sense and I know they helped M a lot.


----------



## awmom

I second the giving up the soup for a while, and/or the grilled cheese, and go back to his previous eating pattern for a few days.  If all is well, then he can add one in at a time and see if he can find the culprit!

I don't know much about iron infusions, although looking back, N could have benefited from some.  They just gave him iron supplements even though his ferritin was extremely low.  The supplements did nothing for him so we stopped them.  His levels just came back up VERY slowly as he healed.  I'm glad they are monitoring closely and it seems they are willing to do more infusions as needed.  Hope he gets to feeling peppy soon!


----------



## Catherine

They need to see how he response to the iron infusion.  His last iron studies looked like to me iron deficiency anemia with concurrent anemia of chronic disease.

If ferritin level increases and hemoglobin level decreases further iron infusions are unlikely to help.  It sounds like a good plan to wait.


----------



## Clash

Well the bms issue went to normal before I could suggest the no more soup. He mentioned that on Saturday he had no appetite at all. He had one grilled chicken strip (homemade) and a couple of sips of a smoothie he made (a true waste of most of the fresh fruit I bought ha!) The next day he said he ate a bit more. I asked did he feels any CD issues but he said no he just didn't feel hungry. Today, he ate a decent lunch then headed off to work so not sure what he's eaten since. Also, on our scale he was 111 this morning, so down a bit from a few weeks ago but since he's had no appetite for a couple days that correlates I suppose.


----------



## Tesscorm

The constant doubt, questioning, second guessing, waiting and seeing, and on and on weighs you down, eh?  Hoping his appetite is really on the rise and just sending hugs... :hug:


----------



## Clash

I know it's so frustrating. Im hoping this is not related to CD. C absolutely feels it isn't because he says he doesn't feel crohnsy. So I'm just watching for now. He said he'd weigh every couple of mornings starting again so we can see if a trend is forming.


----------



## Tesscorm

Hasn't happened with S in quite a while but, earlier on, he would tell me that he could feel when it was 'crohns' related???  Hoping they're both right and all will be well soon! :ghug:


----------



## Maya142

Sending hugs and thinking of you! It's awful wondering if every little thing is Crohn's. I'd just quietly track everything (if C doesn't want to do it himself) - the complaints about weird BMs, the weight loss if it continues etc. Might be useful for when you next see the GI.

:ghug:


----------



## awmom

Gosh, it's always so worrisome......hopefully it was just a bug and his intuition is correct.  Its great that he is taking on monitoring his weight.  I have to almost physically drag N to the scale when he comes for a visit!  Hoping his appetite is improving as we speak and he feels better.


----------



## pdx

Hope he's feeling better soon.


----------



## kimmidwife

I think I would be a little concerned about the increased BMs decreased appetite and weight. Maybe you can call the doctor and have a fecal calp done ?


----------



## Clash

kimmidwife, C just had an fc done 2 weeks ago, the result was 54.

I guess his appetite is a bit better and his bms seem to be back to normal schedule. So, you know, just your average sit around, wonder, twitch, research and try to out guess the evil CD! LOL


----------



## kimmidwife

Clash,
I remember you mentioning it now. Sorry fibro fog makes me forget everything!
Hope you get it figured out!


----------



## Clash

Girl I know what you're talking about. I started an new beta blocker for my IST and my brain fog is now thicker than pea soup!! Ughhh! And the fatigue...I. Can't. Even.


----------



## crohnsinct

Thought u and our resident anemia expert Catherine might be interested in following the live tweets. 


Gi Health Foundation @GiHFoundation   Register now for #GI News Today: Managing Iron Deficiency Anemia in #IBD at #ACG2015! Live tweet with us #IBDNEWSACG


----------



## Clash

Cool thanks!


----------



## Clash

Okay committee here's a question for you guys.

So C has his humira dose today. He'll do it later tonight so hasn't had it yet. He just came in and showed me a raised welt like spot on his belly. 

1. Even though I'm constantly telling him to move around his belly with shots he generally moves around in one area on one side. The spot is in this area.

2. It looks very similar to the welt that comes up at injection site with injection.

3. He says this isn't the first time. He can feel it when it's coming up and it sometimes itches sometimes not.

4. It usually goes down after a day sometimes within the day.

I'm going to mention it to the GI and honestly he may have told me this before but I chalked it up to it being the injection site since it was only a day after the shot that time.

But now I'm second guessing it since it showed up the day of the next injection before the injection.


----------



## Maya142

So to be clear, he has a welt before doing the injection? And that's usually the spot he does the injection?

My daughter has had similar welts from Humira before but only after the injection. She does switch thighs, so she'd had them on both thighs. We were told to give her Benadryl before the shot and we did. No welts. She eventually stopped taking the Benadryl but still no welts.

I'd ask his GI.


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## CarolinAlaska

It may not even be the Humira since it came up 2 weeks later.  Isn't your son the one who gets a lot of allergic reactions?  Definitely I'd premedicate with benadryl, but perhaps you should give the dose in the ER just in case?


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## Clash

Yep. He takes his injection today but hasn't had it yet. He injects generally on the right side of belly button (in some kind of weird clockwise pattern he came up with to ensure not exact spot). I try to encourage both side of stomach and he will relent sometimes but he will not do thighs.

The welt has appeared in the general area of injections on the right side of his belly button before today's injection.

He just came in to make sure I knew that this has happened several times out of nowhere and he can feel it when it starts. He also does get the welt at injection site when he does the injects. 

The injection welts from injection and this spot look exactly alike to me. Raised and welt like. I've wondered if the ones with the injection arent just the med up under the skin?


----------



## Clash

I mean he had a reaction to remicade but only because he came off for surgery then when started back developed antibodies.

He does have allergies but it has never shown up as welt like reaction. He has the bloodshot eyes, runny nose with allergies.


----------



## CarolinAlaska

Ever have an anaphylactic reaction?


----------



## my little penguin

Welts are hives
Injection site reactions only after right after an injection
Not one to two weeks later from the drug

Allergies can change at any time and how you reacted in the past is not predictive of how you will react in the future .
Ragweed season is very high in general right 

And he could develop allergies to almost anything else environmental or food wise 
Try to talk to his allergist 
And keep track of his food and other environmental exposures

Does he take a daily antihistamine ?
Get allergy shots?


----------



## Clash

No with the remicade his antibodies were extremely high (highest GI had seen). His reactions that led to testing was tightness in his chest, flushed face. He called the nurse over and she started solute droll both times. One time he finished infusion next time he reacted again after solute droll and they stopped infusion.


----------



## CarolinAlaska

Probably okay to do it, but I would check with GI first.


----------



## my little penguin

Clash
The reactions with remicade are considered anaphylactic since they included more than one system 
That was why they used steroids to try and calm down things 
The second time they stopped since the pre treat of steroids didn't stop him from reacted and the next time it could have progressed to anaphylactic shock which typically leads to death .
We have auvi q at home but still don't mess with anything that could lead to anaphylactic reactions

That said most reactions occur with two hours of the allergen and typically occur with the first 30 minutes of exposure

Make sure you talk to his docs


----------



## my little penguin

> Symptoms
> Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:
> 
> Trouble breathing
> Hives or swelling
> Tightness of the throat
> Hoarse voice
> Nausea
> Vomiting
> Abdominal pain
> Diarrhea
> Dizziness
> Fainting
> Low blood pressure
> Rapid heart beat
> Feeling of doom
> Cardiac arrest
> People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.
> 
> Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.


From
http://acaai.org/allergies/anaphylaxis


----------



## Clash

Okay, he does typically take xyzal for allergies but only during the season.

I guess just the location of the welt freaked me out a bit.

So MLP are you saying I shouldn't let him do humira tonight or since it's a reaction 14 days out its probably not humira and he needs to see his allergist for a new environmental allergy? He's not concerned at all since he says it's happened a few times before so I guess I shouldn't be. I thought about calling on call GI but they're gonna say hold off and talk to his GI and honestly I'm worried about holding off since we're still uncertain if he's flaring or what.

I'm just putting it out there that these people should not leave a gun-shy, already shell-shocked Mom in charge of these types of things....God I miss remicade.


----------



## my little penguin

I don't know his history clash so it could be from humira or it could be from something else 
Can you call the on call allergist ?
Since your worried about a allergic reaction.
Holding off from night to morning really isn't a game changer but anaphylactic reactions can be .
I lived through those three times at home so not something to be taken lightly .

The doctors going to have to advise you

DS had viral hives last week 
Lasted the whole week with one hive  on his stomach .
But with hives it could be a host of things only a doctor who knows your kids history can help you figure it though


----------



## Clash

Unfortunately, no on-call allergist. I think I may just call GI in the morning as well as allergist. Just to be safe.

Thanks everyone for your input. I really appreciate it.


----------



## Tesscorm

It's always tough to make these decisions :ghug:, but really, I think you made the right one - better safe than sorry and, just moving to tomorrow shouldn't have an impact on C's crohn's. :ghug: 

But, it really does suck having to make these decisions.  

I needed to make a similar decision on Friday - S forgot to ask his GP about his remi infusion and antibiotics.  Then, he tells me Friday evening he still have quite a cough and wheezing (reason for abx) and asks if I think there's a problem with going ahead with remi on Saturday. :ywow:  I hate being in that position - it's so hard to have any confidence in your decision!!  But, definitely, a bit easier with remi because we were able to confirm with dr and nurse at infusion. 

I hope you can reach GI quickly tomorrow morning! :hug:


----------



## Maya142

Sounds like it's an allergy to something else, but it's probably a good idea to be safe. Fwiw, I hate delaying Humira too, but we've done it several times without an issue. A day really won't make a huge difference.

Sending HUGS :ghug:


----------



## Clash

Thanks guys now if I can just convince C because he is seriously balking at waiting.

The welt lasted maybe an hour and a half then disappeared with no med. So weird.


----------



## my little penguin

That is pretty normal for an allergic hive most self resolve quickly within an hour or two but can reappear later for up to twenty four hours.
Viral hives tend to last more than twenty four hours


----------



## my little penguin

Oh and DS tends to get hives more often than not on his arms where he gets his allergy shots but much later in the week if he is reacting to something else environmental.
He does gets actual wheels/hives from his allergy shots but those disappear quickly after the shot.(4-7 hours  but it is a allergy shot kwim )


----------



## Clash

I asked C how long the last one lasted and he said he wasn't sure but not long because he was waiting for me to come home to show me and he did show hubby but by the time I got home it was gone. So maybe an hour because I had only gone to the grocery and back.


----------



## my little penguin

The thing with hives is sometimes you never know why.
I asked for color coded ones ( red for food , blue for environment, yellow for drugs etc...)
The allergist just laughed at me and said DS would just have purple hives with pink polka dots if that was the case since he likes to be a mystery .

:hug:
Hope you get to the bottom of it soon


----------



## Maya142

Sending hugs Clash - I hope you get some answers soon. Has he taken a picture of the welt to show the allergist/GI?


----------



## Clash

No pics but I've told him to get a pic next time. He really thanks I'm blowing it out of proportion by not doing humira and doesn't want to wait. He said it's like putting off the inevitable. This age tho!


----------



## Maya142

My older daughter has given herself Humira twice when I've wanted her to hold it and consult a doctor (she prefers to give herself the shot and then consult a doctor :ybatty. Once for a UTI and once for a sinus infection.

So far, there have been no major issues but I'm dreading the day she gives it to herself and then has to deal with an infection that is difficult to get rid of. 

This age is SO hard!!


----------



## Clash

I know it's crazy because this IS the age where they think they're invincible BUT you'd think 1 or 2 dxes would make them realize their not!

C's thing is that though...like I've already hit the chronic illness lottery twice no way lightening strikes twice. Sometimes I just walk around the house singing...let it go...let it go...because I'll drive myself insane trying to keep him in line!


----------



## Tesscorm

:lol:  I totally know what you mean!!  There have definitely been times I've gritted my teeth and just 'gone along with it', all the while worrying and beating myself up over 'why did I let myself be convinced?!?'  (Knock on wood, throwing salt over my shoulder, etc., etc.,) so far, so good! 

All went okay?


----------



## Clash

C's lab work came back. There was this mess since the GI just emailed the order so we could have it done locally then the lab at the local hospital couldn't do it because of the different ICD codes. Anyway, short story had it done at local GP.

I still have to swing by and it up from GP but GI nurse called and levels are still low. I asked about ferritin and she said it was 2. So she is scheduling another iron infusion.

Also the schedulers should be calling to schedule the scope for December. She's putting the order in today. We're trying to hold off until C is on Christmas break but she said to call before then if anything comes up.

C is doing good. It's hard to believe he is able to handle 30+ hours of work, college classes, homework and his never ending on the go social life with his low iron.

Still confused, fc was 54 yet his ferritin is dropping (I'll know the other numbers this evening). He seems to be having more frequent bms in the morning but all are normal so far and he swears it's more because he doesn't take the time the first time...who knows.


----------



## Maya142

Wow way to go C! I can't believe he's doing all that with such low ferritin. 

For M, they scheduled four or five infusions for five consecutive weeks and that really fixed her iron levels. I wonder why they wouldn't do that for C, given how low his ferritin is.

I hope the scopes provide some answers.


----------



## my little penguin

DS has dropping ferritin as well
As soon as we stopped supplemental iron pills
Crohns is good arthritis is ok 
But ...
No one knows why 
Just is 
And since it's the only thing that is flagging 
Just treatment as usual


----------



## Pilgrim

my little penguin said:


> DS has dropping ferritin as well
> As soon as we stopped supplemental iron pills
> Crohns is good arthritis is ok
> But ...
> No one knows why
> Just is
> And since it's the only thing that is flagging
> Just treatment as usual


Here too with little H. No bowel symptoms. Joints ok. Also low ferritin. Aren't all these kids on Humira? I've never read any connection like that though. ..


----------



## Clash

Maya142, I am not sure why we are doing the one off instead of several. She said this order would have the iron infusion plus an order for iron labs six weeks later. 

C is supposed to pick up the lab work between classes so I'll have all the numbers later to compare to last draw before last iron infusion.


----------



## Sascot

Glad he is feeling good at least. Hope the infusions do the trick!


----------



## Maya142

We also had a mysteriously dropping Ferritin - once she needed iron infusions and was on Humira, and all the other times, it has just fallen and then started to go up very slowly. No idea what it's from but I'm assuming she has a little inflammation in her joints or gut.


----------



## Clash

I want clear indicators back! I also want fair warning! Would it be too much to ask if CD and JSpA could get on the same page and work together when they flare so it isn't the constant "if it isn't one it's the other" guessing game! While I'm at it some serious lecture video that clearly states just because it isn't a straight up CD med doesn't mean you can forget to take it ie allergy meds, vitamin d, iron, folic acid. I swear he thinks those are optional at times!

I would also like some scheduling, it's coming up on Christmas so couldn't CD just freakin cooperate through the holiday season and if you can give me that how about through the rest of college. 

This disease tho! It's like that old game show Press Your Luck...the damn Wammy is always lurking...waiting to pop up. Over it.


----------



## my little penguin

I hear ya Clash
Nothing is ever at the same time


----------



## crohnsinct

Not much of an expert on ferritin levels BUT is C on Mtx?  If so and IF he is forgetting his folic acid I wonder if that could be the problem.  

I bring it up because a few times O has been anemic and everyone started freaking out but t hen we realized she wasn't religiously taking her Folic acid and if you are low on folic acid it causes anemia...don't ask me to explain why or how...I understood it at the time but it had to get deleted to let new info in!  

Anyway, we got on top of the folic acid and anemia resolved...funny how when you take your meds you feel better.


----------



## Clash

Yeah the folic acid is pretty consistent or at least the refills are falling when they should. The same for the iron for the last few months but vitamin d and allergy meds forget about it. Even though his allergy med is seasonal it still takes way linger than it should for the refill! Vitamin d isn't a refill of course but his bottles last entirely too long!


----------



## crohnsinct

Oh yeah...d slips my girls mind all the time...and it is such a small easy pill.  

The other day T forgot her steroid, folic and D...I went to her school and waited by the bus drop off door to the school to hand them to her.  She was mortified...she hasn't forgotten since. 

At least I changed out of my PJ's before I left:rof:


----------



## Maya142

:lol: that's genius CIC! Imagine C's face if you showed up at his college Clash :rof:!


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## my little penguin

Pill box 
Pill box
Pill box

Gets filled with the weeks pills
Allergy meds 
Crohns meds
Vitamins etc....

I still supervise but pill box makes it easier for every one to remember 
Since it's all there in front of you

DS was taking 15-20 pills a day at one point 
No way I could remember what he already took


----------



## Maya142

^Yep we use a pillbox too (well, actually 3 pillboxes). M takes 20+ pills a day and there is absolutely no way we'd remember what she'd taken and hadn't taken. ALL pills including supplements go in the pillboxes. I used to fill them once every week but now M is doing it by herself!


----------



## Clash

We have a month pill box. He's now in charge of filling it. It only contains d and folic acid since iron comes in burst packs and CD meds are injection. He fills it but just scrapes the folic acid out of each day. I know this because there are always D in there but the folic stays up to date. I'd say in a month he may miss 3 days of folic.

So here's the results. I thought the order would include CBC since that would have HGB and HCT but oddly enough it was just iron. Which would that show the whole picture then? Honestly this iron thing confuses me greatly.

IRON *21*  L  35-150

TIBC *396*     260-400

% IRON SATURATION  *5* L 20-50%

FERRITIN *2* L 26-388

Vitamin B12 *340* 193-986

Folate *18.8* H 3.1-17.5


----------



## Clash

CIC what D pill is O taking? C's is a horse pill! It's a capsule though not a pill. It has the cofactors in it. It's the one that has been recommended on here.


----------



## Maya142

Well his Ferritin is low, his iron is low and his TIBC is (almost) high - seems like pretty classic iron deficiency anemia to me. M's results were all very similar.

I'd ask why they aren't setting up several iron infusions since just one clearly didn't work for him :ghug:.


I bet it's hard to remember to go to his pillbox when he only has one pill and it's a vitamin. I know my girls would skip it all the time too in that situation. They're only very good with the pillboxes that have NSAIDs in them because they can feel it if they miss them!!


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## Clash

I don't understand why it's only one either. I mean even if it is an IDA and ACD combo then iron infusions would help the IDA and ferritin stay up if he had several, right?

Yeah, also it has entocort but he scrapes them out as well. Seriously your taking 4 pills what the other two gonna cost you!:voodoo:


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## my little penguin

Sounds like Lp pre iron pills
As of right now he is still normal but dropping ferritin and rising TIBC

DS takes a gummy vitamin D which has raised his levels to 48 from 20 so all good 
Plus they are the closest thing to candy form for DS


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## kimmidwife

Clash,
Hoping you get it figured out. I wonder if he is not absorbing it for some reason. Maybe he should see a hematologist?
Also for the infusions maybe they want to see how he does after the one before they order more?


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## crohnsinct

Pill box here also but she walks by it just as easily as walking by the containers.  I think it is like someone said above...the D and folic aren't the big gun controlling the disease so easy to forget.  She has even forgotten mtx on occasion.  I am no better though...I forget to check.  

Clash:  I will get you the name in the a.m.. But they are little gel capsules,


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## Catherine

Clash

can you post the way each of the numbers are moving.

The numbers don't quite clear cut to me.

I am out but will look further when I home


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## Catherine

Clash said:


> Results
> Iron, Serum Labcorp	40 - 155 ug/dL	14
> IRON SATURATION LABCORP	15 - 55 %	4
> FERRITIN, SERUM LABCORP	16 - 124 ng/mL	3
> 
> He's been on niferex for awhile now so I guess inflammation kept it from absorbing?


I think I have found previous results.  All result seem to have increase but ferritin.


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## Clash

Yes that's the previous numbers, Catherine.

So his next iron infusion is set up for next Tuesday. Hopefully, six weeks out from this one we are back on track.


----------



## Catherine

What have notice is some results mirror that my youngest daughter

- inadequate response to iron therapy 
- high folate
- low/normal b12

I am starting to wonder whether part of the answer is supplement b12.

Paging David for advice on B12.


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## Maya142

M saw a hematologist (because we didn't know she had Crohn's when she was anemic and needed iron infusions) and it was actually quite helpful. It might be worth a try.

Good luck!!


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## Clash

Well you all know the old saying...careful what you wish for.

C has been having more bms. Today he said he had night bms last night although not D and then this morning had to turn around headed to college because had to go. He also said one side of his stomach was more bloated that the other last night before bed.

When I said I wanted indicators I didn't mean this. I light that comes on when things are amiss would've been fine


I'm just ready for the scope.I'm most concerned about inflammation at the anatomosis and it causing narrowing and that the GI is on target that anti tnf aren't fully efficacious for C.


----------



## Clash

So if there were inflammation then I'm assuming they'd bring the humira schedule closer together?

I've never thought about this in relation to entocort but how do you know if it is effective? C will have been on it for 3 months at the time of scope. Weaning from 9mg down to 3mg. If there is active disease then does that mean entocort didn't work for him? I mean when he was on pred there was no time that he wasn't having symptoms of CD. It was all the hate but none of the love. The GI stated by symptoms labs etc C got all the side effects but none of the efficacy. But is that the way with entocort as well? That if you don't respond (of course now it would rely on last scope and this scope since C up until now didn't have symptoms with his active disease) in a 3 month slot it doesn't work or would it just keep going?

Also, if mtx helps JSpA then the relevancy of its effectiveness with CD is not important, right?


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## my little penguin

They may or may not move it up since he has no symptoms it's harder to determine if he had any response to humira .
DS had response but it didn't last the whole 14 days.
Then had joint swelling so it was moved back to 10 days 
More symptoms after day 7 so moved back to every 7 days.

Since his markers kept climbing and he needed steroids 
Hard to say 


Entocort no exp go said it would work for DS too many areas that wouldn't be hit 

I think you have to wait for scopes 
Or symptoms to get worse and move up scopes 

Does the Gi know about latest symptoms ??


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## Clash

No I spoke with GI nurse today but it was about the next labs just being done at scope since that will be about 6 weeks. C hadn't told me anything about the bloating and such then.

He wants me to call and ask about Boost tomorrow as he thinks he wants to try to drink it for weight gain. I'm going to call be he has never done well with any of the Boost like products. They come back up fairly quickly and he says they make him nauseated and feel heavy on his stomach. He thinks maybe I just haven't found the right one but I've bought boost ensure carnation breakfast in all yltypes and same reaction. He says some of it comes back up because of the texture and what makes it to his stomach just makes him sick feeling and crampy.

I'm going to call and I'll buy a few more kinds to try but I don't see it going any differently.


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## my little penguin

Has he tried semi elemental ?
I know DS had issues with boost pedisure etc..,
But not Peptamen jr


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## Clash

Only with ng tube, I mean it stuck some to his tongue once while hooking up but never drank one.

We did talk about EEN if scopes were bad and it was evident entocort wasn't working. He said that he would try his best to be compliant but he just didn't know if he could stick to it. I told him that was a conversation for later if it came to. I figure no reason to stress over something at this point.


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## my little penguin

Also
There is the partial en with crohns exclusive diet
That allows some food 
DS has been on it with humira and mtx since April 
It held him while off humira due to infections 
But didn't keep his joints in check


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## Maya142

I think he might need semi-elemental shakes if he has those symptoms with Boost/Ensure (even just for weight gain, not EEN). M had the same symptoms (plus diarrhea) and couldn't tolerate them. And then started having the same symptoms with Peptamen so we had to go to elemental (Neocate).

If Boost doesn't work out, would he try Peptamen? Or Pediasure Peptide? Personally, I think the NG tube would be easier since he knows how to insert it but of course teenagers know best .

If he doesn't respond to TNF inhibitors, you might want to look into Stelara. MTX definitely helps with JSpA but typically doesn't help for the SI joints/spine ("axial JSpA"). So if they're involved, kids are put on TNF inhibitors. 

Since (if I remember correctly) C's SI joints are involved, I'd guess they want him on biologic. S's rheumatologist has one patient on Simponi AND Entyvio (but an adult, in his 20s) which I thought was kind of interesting. His CD was worse than his AS, and he had been on Simponi. When Entyvio came out they put him on it but his AS flared so they added back Simponi at a lower dose.

Typically if you fail the anti-TNFs and have both JSpA and Crohn's, your options are pretty limited (M is going to be in the same boat eventually I think). Stelara is really currently the only option.

Hope you can have the scopes done SOON!


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## Maya142

Wanted to add - if they think Humira is working (somewhat) but doesn't last the whole time, they may increase the dose instead of putting him on an entirely new medication.

Both M and S went from 14 days to 10 days and then to 7 days. I kind of wish we hadn't tried every 10 days for both of them because it was a waste. It worked great weekly with MTX for both of them (S is still on it but of course, she doesn't have IBD).


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## Clash

I really don't want to rock the boat until after the scope. We already have humira, mtx and entocort (which I'm not sure about since if it does help it will already skew the scope results for if Humira is working) so to me adding EN with the IBDAID diet is just one more thing to muddy the waters.

I did tell him about the partial EN with ibd-aid diet but he is supposed to be moving in with a roommate in January and I don't think the diet would be feasible for him to cook and carry out on his own. I wish he could take it upon himself to carry it out but I think it would be unrealistic.

If the scopes were fine and he wanted to do EN for weight gain  and would be compliant then I would be for that. 

All of this a just my stream of consciousness btw. My brain just does this when thinks seem to be going askew.


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## kimmidwife

Sorry to hear this. It is like our kids can't get a break.


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## my little penguin

The problem is if and that's a big if 
He is starting to flare more then waiting for a scope in 6 weeks may not be an option
Regardless 
I think that has to be up to the Gi 
As well as whether more therapy including een is needed but I assume he wouldn't wait on scopes 

Fwiw even when DS was doing really well
If we dropped supplemental nutrition he started to lose weight


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## Catherine

Anemia is symptom of something.

What is the cause of the anemia?  

My Sarah never had classic signs of flares.  When she flares her blood count starts drops.  Begins to have problems with diary products.  Faecal calprotectin starts to climb about 3 months later not high (200s).  Period of pain.  No bowel symptoms.


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## Clash

Yeah, C doesn't lose weight bit he is thin. That has not changed since surgery. He may gain 3 or 4 lbs but it doesn't stick around.

The only time he gained weight was in EN but when you remove it the weight goes too. Which is one of the reasons in the past he's said he wouldn't do it again. But if he's considering it then a step in the right direction, maybe.


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## Clash

Yeah he had active disease at the cellular level on the last scope. So we think the anemia is maybe CD since JSPA is quiescent. We added entocort when discovered anemia hoping it would bring things around but then questioned when fc came back normal. But stayed on it.


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## matt82

Clash said:


> No I spoke with GI nurse today but it was about the next labs just being done at scope since that will be about 6 weeks. C hadn't told me anything about the bloating and such then.
> 
> He wants me to call and ask about Boost tomorrow as he thinks he wants to try to drink it for weight gain. I'm going to call be he has never done well with any of the Boost like products. They come back up fairly quickly and he says they make him nauseated and feel heavy on his stomach. He thinks maybe I just haven't found the right one but I've bought boost ensure carnation breakfast in all yltypes and same reaction. He says some of it comes back up because of the texture and what makes it to his stomach just makes him sick feeling and crampy.
> 
> I'm going to call and I'll buy a few more kinds to try but I don't see it going any differently.


Hi I'm just responding to the boost drinks you are talking about. I too have corhns disease and I'm battling a fistula and abscess these days. What I have found really good are the ensure plus chocolate drinks. I use to have these thinks but they are better then they use to. I also had so samples of a drink called resource it is 235ml 455 cal and 28 g or protein. It's ok put it can be mixed into other things too. Hope all goes well and I'm glad I found these different fourms as I'm looking to start humira soon.


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## Maya142

I think you really need scopes to clear all of this up for you. It seems likely that there is some inflammation in his gut, which is causing the sudden increase in BMs and the BMs at night. And, of course, is also causing the anemia.

But until you scope, there is no way to know how you will proceed. His Humira may be made weekly, or he may have to switch to a completely different medication. He may need supplemental EN or EEN. It's just hard to speculate without the scopes.

On another note - Clash, it seems like C won't do the NG tube because he thinks gaining weight like that is pointless and not sustainable. But there are kiddos who do use NG tubes for quite a while and then switch to g-tubes. In M's case, right now, it does seem like she's going to need her formula just to maintain her weight. We don't expect this to change drastically any time soon.

I guess what I'm saying is that the reality of the weight gain situation may be that he needs supplemental EN indefinitely to maintain his weight. I know that's very hard for them to come to terms with but that might be what is needed.

 It certainly is for M. We tried to lower her feeds the other day and she promptly fainted in the gym the next day.


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## Clash

Oh no she fainted? Poor thing! Is she okay now? Did you  increase her feeds back up?

Yes, that was C's issue with EN. Shortly after surgery I was concerned because C wasn't gaining weight. Still somewhere between 112 and 115lbs. The GI, at the time, said that alot of kids do start gaining weight after surgery. But it being a small bowel resection there is the possibility he will remain thin. Dusty stated the same and that her daughter remained thin. That's when I stopped obsessing about the weight.

That was all before the first followup scope that showed the cellular inflammation so of course it might not have any thing to do with the small bowel resection now.

C has just recently discussed wacting to put on some weight. If he chose EN or a g-tube (I think at this point that would be unlikely and probably something the GI wouldn't consider) I would support it but I think C would tire of it. 

I agree I think this scope is necessary, even if all was well since there was inflammation on the last one. I don't want to add anymore treatment before then unless he wants to add a couple of Boost in an effort to gain. I hope we can just make it to the scheduled scope time which is 6 weeks away. 

If it has to be sooner then it just has to be but the way it's scheduled right now it would be over Christmas break. So he wouldn't miss classes which is something he has been adamant about. Trust me though symptoms start popping up and he'll go along with sooner!


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## Tesscorm

Ugh, Clash, I'm sorry there are so many questions. 

You know S is still drinking a Boost shake most days... and it's been over 4 years.  At this point, and with only one, max 2 shakes per day, I don't know think he would lose weight if he stopped it but, I do believe for a long time it helped maintain his weight and nutrition.  As Maya said, perhaps C needs to look at it as a longer term aid, not just a quick fix.

While drinking the shakes might be easiest, there are also Boost puddings with similar nutritional values/calories and Boost's site has a list of recipes using the shakes.  As for Carnation breakfast, when my kids were much younger, I would dilute the shake with milk for them - perhaps, he can have 1/2 shake with milk in the morning and the other half in the evening?  I'm sure you could try this with any of the shakes.

I'm sorry, I've probably just missed the answer to this question but, is his GI willing to move up humira before the scopes? ...if his symptoms continue or increase?

Sending lots of hugs...  I really hope this can be resolved easily with a dose adjustment! :ghug: :ghug:


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## CarolinAlaska

My daughter isn't tolerating Carnation or Ensure right now, but interestingly, she can do Ensure Clear without having abdominal pain and sick feeling.  She said it is more like drinking juice with a little after taste.


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## Mehita

Has he tried Orgain drinks? I think they are thinner tasting, not so heavy. They might be an option?


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## Clash

I swear guys we've tried them all. I told him this when he said he wanted to try them to put on some weight. I think he believes I can just magically come up with a new type, flavor brand that he's gonna tolerate!

Although, when he gets off work tonight I'm gonna have him try the carnation/milk mix Tesscorm mentioned.

They have a gym with a health food bar, I told him he should go by and try the selection. He might find something.

He does gag, vomit and feel sick to his stomach with these otc brands but he doesn't like sweet to begin with, no cakes, cookies, shakes, brownies...all the things kids should love. Trick or treating with him was awesome because he didn't care if I ate all the candy!

We tried smoothies once, those were ok. I'm thinking of showing him how to make a smoothie with some of these and fruit or just high calorie ones. So if he wants the weight gain he can be in charge of it! That way he can pick and buy what he wants to put in them to his tastes and I want feel so defeated when I go out and purchase all this stuff and he quickly gives it up for whatever reason.


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## Tesscorm

I hope diluting it helps!  And, some of the Boost recipes are exactly as you mentioned above - using the shakes with fruit, etc for a smoothie.  Hope he can tolerate one or the other.  Another idea - my daughter adds a scoop of protein powder to plain yoghurt...  if he likes yoghurt, perhaps you can try flavouring yoghurt with the carnation powder??  Have no idea how that would taste though??

Funny about him and sweets, S was/is the same.  I was constantly trying to find ways to get fruit/veggies into him as a small boy...  thought choc fondue!!!  Get him to acquire a taste for fruit with choc and gradually withdraw the chocolate...  he tried just the melted choc first..., didn't like the chocolate!  Found a recipe for brownies made with pureed spinach - they were delicious!  He took one 'polite' bite, said 'sorry mom, I just don't really like brownies'! :yfaint:  Although my daughter was very happy with my experiments!  :lol:


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## Maya142

Has he tried Duocal? It's a powder that you can put in food. M, as you know, is the queen of being picky, but she said she couldn't really taste it. She didn't tolerate it but I think that was because of the gastroparesis. She had it in oatmeal and pasta.

I'd let him try all the shakes he wants and then if they don't work, suggest trying tube feeding again .


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## Clash

C is the same way. I just made brownies the other day and said how about a hot brownie...nah I don't like brownies. 

Its so foreign to me because I always loved sweets. Eat cookie dough. Check. Eat cake batter. Check. Chocolate in all forms. Check. Cupcakes, doughnuts, candy bars, cookies, most anything that contains sugar. Check, check and double check.

GI nurse says if he wants to try different drinks for weight gain go for it. Also told her about the symptoms he's had lately. Just supposed to keep them in the loop.


----------



## crohnsinct

Well Clash this is a hard one because if the weight issues are because of inflammation....... 

But I know he is like O and just a really skinny kid.  we don't use any processed foods so protein powder, carnation instant (moment of silence) etc  are out for us. 

Here are some things that work for O: 

Avocados...every day! 
Olive oil dripped on everything 
Lots of eggs 
Loads and loads of good healthy carbs (although on IBD-AID not around lil sis)
Loads of nuts or nut butters 

I know that this may sound like a heart attack waiting to happen but I eat the same way and my cholesterol has gone way down over the years...all I did was cut out the processed stuff so maybe there is something to the healthy fats.  

I'll keep thinking on her tips and tricks.


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## Maya142

Hmmm... M loves sugar (she really needs to eat less sugar ) so all her snacks are dessert related. We also use a lot of olive oil in things. M like almond butter too. 

M is also naturally thin but with her feeding tube, we had to slow feeds so that she didn't gain too much weight!!! I can honestly say, I NEVER thought we'd get to this point. In May, she was 80 lbs! She is now 104 lbs :dance::dance: and looks great!

Made me wonder about being "naturally" very skinny - would they be this thin if they didn't have IBD? 

I hope the shakes work for C!! Good luck!


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## my little penguin

Maya142 said:


> Made me wonder about being "naturally" very skinny - would they be this thin if they didn't have IBD?


^^^^^yeah that 
Last year DS hovered at 89 lbs till April this year and barely gained 
Figured he woukd just be a skinnier IBd kid again

Once we added partial en and crohns exclusive diet 
Yep he is up to 100 lbs 
So inflammation and calorie absorption can plan a role


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## QuicksWife

My ferritin was really low back in april. I was scheduled for iron pump for 15 rounds. Just got done a couple of weeks ago. I'm hoping my body will keep up and not drop my levels again. I am starting humira next week for a fistual.


----------



## Clash

Maya142, when C was on EN he gained around 25 lbs or a little more and thats when we had to back him down. Of course, he then only maintained and any lower amount of calories and he settled back at his original weight.

There is no doubt to me that he would be naturally thin. Both sides of his family are. His Dad was 115 at hs graduation. And me 102lbs in hs his sister didn't reach 100lbs.

So, I can see him with maybe 7 to 9 more lbs on his frame as his norm if CD hadn't come around.


----------



## awmom

It's so worrisome when the kids are so thin.  I know you said C had only had peptamen with the NG tube. Would he be willing to try it by mouth?  N was never able to tolerate Boost/Ensure/Carnation... Peptamen was a life saver his first year in college and during the summer when doing and internship.  He went from drinking peptamen Jr, then to the adult vanilla peptamen because he said the jr was too sweet, and finally the unflavored/unsweetened version which he said tasted bad but he got used to it. Portability was a big plus.  His problem was that he used it as meal replacement rather than as a supplement so he never gained weight on it.  Home made shakes are probably the best/healthiest....maybe he could try the peptament when he is on the go?  At least, they are easily absorbed and don't sit as heavy.  There is another powdered product we used for a while called Absorb Plus which he tolerated well since you could adjust the amount of fat you use, but it was quite expensive.


----------



## Clash

awmom, you bring up a good point. I think meal replacement instead of supplement could be an issue with C as well.

He wouldn't drink peptimen I don't think. He has only tasted it while setting up his ng.

I've told him check the gym bar, Buy things to make smoothies or check stores for powders. It's truly him that is on this weight gain track and I don't think it relates to CD as much as there is a training center at the college and some of his buddies go.

He supposed to be moving out soon. So if he wants to gain weight he'll have to take control of that. I think his diet in general will have to change since for the most part he eato all but one meal at home. I think he'll have to incorporate a lot more processed foods. So he'll need to determine what he wants to incorporate with that.

I have given him these ideas so he has some options.


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## Maya142

Does he like juice? Both boost and ensure have juice kind of shakes - ensure clear and boost breeze I think. M wouldn't touch them so I have no idea how they taste.

Replacing meals with shakes was our problem too which is why the tube with overnight feeds worked so well.


----------



## Tesscorm

Good point on meal replacements... yes, that is what S has often done with his Boost shakes.  He grabs one in the morning as it's quicker than making breakfast or any other time he's rushed, ie before a game, class, etc. - healthier than something he'd grab on the run but doesn't 'add' calories to the day's total (if anything, may even reduce the day's calories given the high calorie count of most fast food).


----------



## Tesscorm

S likes the Boost juices. I have read here that there's an after taste (or something) and I did once ask S but he said he thought they tasted like regular fruit drinks.


----------



## kimmidwife

Caitlyn hates all of those shakes. We have tried so many. I have just been trying to stuff her with cakes and ice cream.


----------



## awmom

I know what you mean with him probably not wanting to drink the Peptamen.  N said he would NEVER drink it....well, he ended up drinking even the unflavored (which is very nasty).  Now however, he doesn't drink it much.  He moved into an apartment rarely eats out because it never agrees with him, and is now cooking!!!!I never thought I would see the day when he would do THAT!!! He has not gained any weight, but as of 4 weeks ago, he has not lost any either.  I did have a scare last week because he said he had so much to do and was so stressed he kept forgetting to eat!! I think those are the times when the supplements do well as meal replacements!!
I know you said he is moving out soon, and I'm sure he'll figure it out.  After all, I know he has had the BEST training from home!!!!


----------



## Clash

C's check up rheumatologist appt was today.

I swear this joint thing just flat out confuses me.

So more finger xrays because knuckles were large and she wanted to compare to April xrays.

She's really pleased with the JSpA side and his hips/lower back. She thinks it is fully under control with humira and feels C is one of the rare ones that gets relief from mtx.

The polyarticular side looks good from pain side since C has had very few episodes in wrists but fingers concern her. 

She will be out of town when C has scope bit wants us to call and update the nurse about what GI saw and let her know when biopsies are posted.

She doesn't believe the anemia is from the joint disease side because his levels are a lot lower than she sees among her other patients that deal with JSpA. But interested to see if iron is up at scope time and scope results.

Overall good visit and C loves this doc. Beyond the fact that I've never met someone that talks as fast as she does, I like her too.

Oh btw, the "sutures" at hip on xrays that she mentioned last visit but we forgot to ask about. She meant sutures or suture material that radiologist commented on film. She assumed it was from his small bowel resection. She sent a note to radiologist to review again. But C's xrays were in April and his surgery the August before, would their still be suture material? Because if so...well...yuck.


----------



## Maya142

:lol: Glad we now know what she meant by sutures!!

I'm so glad C's joints are doing so well. I hope the finger x-rays are clear too (fingers crossed  ). 

It's interesting that MTX is helping his back and not his fingers as much - now that's unusual!  My girls also swear that it helps their SI joints/spines even though studies say it doesn't. I guess they're all in that minority!


----------



## Tesscorm

So glad he had a good apptmt!!  I hope the results from x-ray show that there is nothing concerning! 

That is surprising re the sutures!  I wouldn't have thought they'd last that long before dissolving??

Haha about speaking quickly!  I've worked on trading desks for years and all conversations are very quick, half sentences!  I often feel like other conversations are in slow mode and I have to stop myself from tapping my foot or fingers!  :lol:  (Wine helps even things out!:ybiggrin


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## Clash

Maya142, she said the same thing about him and the mtx. She said rheumatology can already be murky area and then C decides he doesn't even want to follow the rules they have!

I think the fingers are fine. They didn't look more swollen to but what do I know.

Tesscorm, I would have a nervous breakdown in that environment.


----------



## CarolinAlaska

I find it all very confusing too.  I thought I had done my homework, but I left the rheumo office more confused than when we went in.


----------



## Sascot

Glad things are looking good, hope they continue that way


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## Clash

Okay, one down one to go! Hubby just called and daughter's wisdom tooth extraction went well. They're home and she's sleeping. C and I are getting ready to head to the GI office for scope. C's prep went really well.

On a side note, there was a problem with the rooms we were supposed to stay in (we reserved two adjoining and they didn't have it ready) so we got upgraded to a presidential suite! Pretty awesome 2br 2bth huge living room and dining room with complimentary room service woohoo!


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## pdx

Good luck today!


----------



## Maya142

Good luck!!!


----------



## my little penguin

Good luck


----------



## Tesscorm

Well, if you've got to prep...  that sounds like the way to do it!  

Hope all goes well!


----------



## crohnsinct

Complimentary room service!  Their no dummies...how much is a person prepping for scopes going to cost them?!  :rof:

Good luck!


----------



## Jmrogers4

Prepping in style.  Good luck today, glad things went well with your daughter as well


----------



## CarolinAlaska

I hope all goes well.  My oldest gets her wisdom teeth out on the 30th.  Ugh!  Glad for you for the unexpected room change!


----------



## Clash

They took C back about 1:30 so just waiting for him to return.

That's the latest he has had a scope scheduled. He was getting nauseated and light headed from mouth food. Center is set up to start with the youngest first so at 19 he was down the list a bit.

He was in good spirits and cutting up with the nurses and GI though so all was well.


----------



## Maya142

Our hospital does that too - M is usually one of the last but it's never been 1:30. Poor C - that's a long time to be hungry.

Sending hugs - hope he's back soon. We're thinking of you :ghug:!


----------



## Clash

Not a good day. C is inflamed throughout. Report states rectum, sigmoid colon, descending colon, at the splenic flexure, in transverse colon, at the hepatic flexure and in the ascending colon is congested, erythematous, ulcerative and vascular pattern-decreased mucosa.

Also congested inflamed ulcerative and vascular pattern decreased mucosa in distal ileum and he mentioned the surgical site having active disease but the opening was not narrowed.

So the colon is something new, in the past it was located only in the small bowel and mostly at IC valve. Scope before surgery showed possible slight inflammation in the cecum and imaging at dx stated nothing at rectum but GI read it and felt there had been past inflammation and that was why he had a skin tag.

Anyway, not a good day. Everyone is really down.

GI said it wasn't severe inflammation mostly small apthousted ulcers and if it was before meds he'd be confident but that C is on mtx, humira and entocort and that the disease seems to have progressed from August colonoscopy when he was visually pristine but biopsies showed active inflammation.

I just hate Crohns!


----------



## crohnsinct

I am speechless!  So sorry about this Clash!  I despise Crohn's!  

How can this be?  He was basically asymptomatic right?  Just the anemia issue?  What a puzzle!  Did the doc give any indication as to next med step or was he to taken back to speak about it yet.  

Just sucks all around! 

:ghug: to you all.


----------



## Clash

He wants C to move to weekly humira. C is really fighting this. C was out of it when the GI came to recovery so I guess I'm going to have the GI speak to him by phone or asomething soon as he can at a followup. 

C doesn't think he can do it. He said the pain is too much and he hates and dreads the shot now. We discussed different strategies but right now C isn't open to any of them working.

The GI also mentioned entyvio now or after giving humira weekly a try. He again brought up his concerns that C may not respond to tnf biologics. But he also had concerns about entyvio if the inflammation gets more ulcerated, something about it doing really well on first layer like UC (complicated explanation which may have included something about white cell flow?) but can struggle with deeper layer ulceratuon. I don't know it was all a blur.

Entyvio I don't think helps with JSpA so it may be out anyway.

Not sure what to do. I'm sure we'll discuss in depth at biopsy follow up. 

Just blech yuck sucky feeling at seeing the images and C:s reaction to once again flaring and being asymptomatic.


----------



## my little penguin

Great big hugs 
So not fair

I can say DS was like C 
Hate dreaded the shots
Screamed etc....
Lidocaine added to the syringe does make a difference 
But asking him mental questions during the injections that he has to answers
Blocks the pain signals more than anything else 

Entyvio is not designed to work for JSpA

Stelera and simponi are


----------



## Optimistic

So sorry you had this shock. 

Hoping for some wisdom for you, c, and Drs in sorting out next steps.


----------



## Clash

Yeah, I thought I remembered you and Maya saying that about entyvio.

The lidocaine was one of the strategies I mentioned. We're going to discuss it with the GI. I also mentioned therapy since the dread starts 3 days before the shot and makes the fear of the pain worse and is certain to be making him tense. Right now, he can't see beyond the fact that it's worse than last scope and throughout. He's using that to say humira isn't working. I know this is partly just a knee jerk, upset, angry reaction. So I'm going to find a psychologist next week.

There is no pediatric chronic illness therapist near us. The closest is about 2 hours away and that isn't an option with his school and work schedule. There is a guy that works with kids and a friend of ours works in his group so I'm gonna talk to her.

I'll try with the questions to redirect attention this Sunday shot.


----------



## Maya142

Sorry Clash - we have been told over and over that Entyvio does not work for arthritis. 

Stelara is supposed to be approved for Crohn's soon. It did well in a small AS trial but the researcher we see says he hasn't seen great results with it yet. However, it is approved for psoriatic arthritis and he definitely does think it is an option and worth trying for M. 

Sending bigs hugs - it is really hard when your kiddo does not respond to anti-TNFs. We're pretty sure M is one of those kids - her AS is not so great on Simponi (though her IBD does seem to be responding). I don't know what's next for us either, the options REALLY are not great.

I have heard from several JIA moms that adding Lidocaine to Humira made a huge difference. I'd ask C what the harm is in just trying it? It might help. Tell him you'll do the syringe and deal with all of it. 

And of course, I'm a huge fan of M's psychologist - she's helped M deal with countless things - 4 hospital stays this year, several NJ tubes, the GJ tube surgery etc. 

Another thought - when M was reacting to MTX the way C is to Humira, her pediatrician and rheumatologist talked and prescribed a small dose of Ativan to take before the MTX. In her case, they wanted to figure out if the nausea was anxiety or actual MTX nausea. Well, it was MTX nausea but she way calmer and the whole evening went much more smoothly. 

Could C try something like that? Just for a few times, until he gets used to lidocaine and the weekly shots? It might help.

Sending hugs :ghug:.


----------



## my little penguin

They can't be easy questions he really needs to think of the answers for it to work

Things DS psych did
Have c explain how long the pain truly lasts 
( 10 seconds tops )
What other things can he handle for 10 seconds
The problem you will run into is he doesn't see the benefit in symptoms or scopes
So if he doesn't that will be very hard
DS sees an increase in symptoms when it's late so he feels the shot is worth those 10 seconds


----------



## Maya142

We have tried the asking question technique - my older daughter has a roommate ask her questions in school (thank you MLP!!) and it really does work.

She also uses buzzy though I'm pretty sure it only makes her not feel the stick (so she still feels the burn of the medication), but she likes it so why not?!

We tried having cake after the shot - that worked better when they were younger, but it still definitely helps.

I can see that for C, making a pros and cons list might be hard, since he's not even sure that Humira is doing anything. I have no real way to make that easier, except maybe to say that if he tries something else, he will start from scratch and with Humira, he's already put a few months in waiting for it to work. Why not give it another shot (pun intended)?!

We found that Simponi took months before M even saw a difference in symptoms (though C is asymptomatic, so this might not even help). And Cimzia is supposed to be the same and people say Entyvio takes even longer!


----------



## Clash

Maya142, that is so funny you mentioned at Ivan because that is one of the things I mentioned to C as a strategy. It was the only one he was up for and only because the iv atIvan worked so well with the catheter reinsert ion after surgery. I made sure he understands there is a definite difference between iv and pill. But I think it's worth a shot.

Yep, MLP you hit the nail on the head the fact that he's asymptomatic and that the use of humira hasn't led to improvement have made for his biggest points in his argument against going weekly. I'll definitely mention the questions strategy.


----------



## Maya142

There is a big difference between the IV version and the pill but the pill does work well!

 There was a time when M hated MRI's so much that she'd dread them for days, because it hurt so much to lie flat with her toes pointed out (for hip MRI's - they take like 2 hours). So, they gave her ativan and she was sleepy and wasn't too bothered by the pain. 

We have used it for anxiety too - works well.


----------



## pdx

So sorry to hear this news.  

Like Maya, we have also had good luck with small doses of oral Ativan.


----------



## CarolinAlaska

I'm so sorry. Clash.  That is horrible news.  I hope whatever you do next is the answer for his deep remission.


----------



## Catherine

No words of wisdom.  It very hard when they are young adults.


----------



## Chester31

So so sorry to hear this Clash - yet again we are in a similar position. J had his first appointment with adult GI this week. Weekly Humira is not working despite great blood levels and no antibodies. Inflammation throughout small intestine. Surgery not an option as he would lose metres of bowel. News is so hard to take when there are no outward symptoms. GI trying to get approval for Entyvio for J (he is 17 - only approved here for 18 and over) and hoping to start Jan/Feb. Am pinning all my hopes on it.


----------



## Clash

Oh no I'm so sorry to hear that Chester31! I hope the approval comes through and that entyvio is his miracle med!

It's so hard to keep going through meds and getting your hopes up only to see the med failed them. And when they're asymptomatic bad results can really throw their psyche for a loop.

I hope both our boys find remission soon.


----------



## Sascot

So sorry to hear that! How awful for you all to have to deal with when it wasn't expected. I have to say I can see his logic at not wanting the shots weekly if it's got this bad on Humira anyway. Also (and it's just my opinion), the point of meds is to make kids feel better, if the thought of the injection is causing him so much anxiety for days before it, it isn't helping his quality of life. If he had to change to weekly almost half his week would be spent upset, it can't be good for your body to spend all that time in the flight or fight response from fear. Very difficult decision for him and you. Hope whatever comes next finally gets a lasting remission!


----------



## crohnsinct

Clash:  T was the same way the second time on EEN "what's the point, inflammation will just come back anyway"  Then on steroids, "whats the point"....but the thing is he hasn't fully exhausted Humira...maybe if you explain it that way...that you should try everything in your power with the current drug.  I like what someone said about "you are already this far in".  There are a few people here who had success after moving to weekly Humira.   I don't know about mentioning how long another drug will take to start working.  Knowing C and his personality (r teens in general) he will say, "exactly so lets get started".   

Just sucks that there are no outward signs, no labs that identify inflammation and the poor kid has to be scoped so frequently.  

FWIW - our doc doesn't have faith in Entyvio for Crohn's, especially small bowel Crohn's.  My nephew failed all the anti tnf's and tried Entyvio because his Crohn's was  limited to colon.  It takes forever to start working.  A year in he is a fail in Entyvio also.


----------



## Pilgrim

What a terrible disappointment. I wanted to  suggest that you encourage him to try the weekly Humira. The upsides are the possibility it gets him into remission without the whole adjustment to a new medication and also just knowing that he used it to the full before moving on.
Our child is very young so it is different but psychologically the shots are tough on her. I bet C is tougher than he thinks he is right now. He can do this. I've read what an amazing guy he is here!


----------



## Clash

Question, if there's no fever, runny nose, stuffy nose or any other cold symptoms except dry cough do you wait to see if it's jus a cold or do you go into the GP?

C has had a cough for a few days. Nothing else just a cough. Well he says first thing in the morning it feels like head congestion but I've not seen that just the cough throughout the day.

His GP is definitely a cold and virus guy. He's never interested in zebras so most appts last 15 mins and end with probably a virus (or UTI) come back in a week if it's worse so I always dread making an appt.

Just not sure is this is normal winter cold and I should give it a bit longer. Unfortunately he's had it since last Wednesday (yeah he didn't mention it before the scope only on the way home, thankfully that ended well..ughh).

Its so funny, always ready to pounce because of CD, so much so that I can't quite remember persistent cough in a kid protocol! Ha!


----------



## Sascot

Our GP wouldn't bother doing anything unless it's been going on longer than 2 weeks. But then our gp's aren't always very good!


----------



## CarolinAlaska

I'd say give it ten to 14 days unless he gets high fever, sore throat or acts really sick.


----------



## crohnsinct

i usually wait until it is really annoying me so about two weeks


----------



## Tesscorm

Clash, just catching up....  I am so, so, so sorry at the results. 

I completely understand C's frustration.  Really feel so sad for him.  While symptoms are never pleasant, being asymptomatic can feel like get suckerpunched every time. :ghug:

I'd also try to reason with him to give weekly humira a try.  I know he's going to feel frustrated and that it's a waste of time but, hopefully, he'll come around to understanding he shouldn't knock out a med too soon.   Do try the lidocaine, also the mental question - worked really well for S as well when he had to have some painful shots.

I don't have any advice, just sending my thoughts, hugs and wishes that whatever he tries next will work for him! :ghug: :ghug: :ghug:


----------



## kimmidwife

Clash,
I was out of town and just got back yesterday and am catching up. I am so very sorry to hear about the scopes. That is really upsetting. 
If you decide to try Ativan I want to let you know it works great for me when I need it, I take it for anxiety.
Entyvio does not seem to work well for arthritis but on the plus side it is working for Caitlyn finally but it did take a while. Since s lot of his disease is in the large intestine it might work faster for him. It seems to take effect in the large intestine much quicker then the small intestine. I don't k ow why your doctor said it doesn't work for deeper disease in the the large intestine though because I have been speaking with some people who have very severe UC and Entyivo is the first drug that has put them in complete remission.
The big issue would be how to control the arthritis though.
This disease super sucks!!!!!!!! I am feeling so badly for our kids right now. They just never get a break!!!!!!


----------



## Clash

Thanks Kimmidwife.

That is what the GI was saying, it's effective with UC because it affects the top layer only. With CD, it's transmural and they've found that with severe ulceratuon through many layers the results weren't as great as those with mild ulceration.


----------



## my little penguin

Same thing I have read great for UC
Not so good for crohns
And not an option for ds since we found out in April had to hold his Humira for a few weeks
His joints inflame fast with a biologic

Clash hope things improve with weekly
It did take da about 4-6 weeks at weekly to notice a difference


----------



## Clash

MLP, that's the other thing I've wondered about. Inflammatory markers good, last FC normal, and no symptoms so how do we know if it works? Anemia improvement? Maybe do another fc now to get baseline again? It has been what 3 months since the last one? I need to look it up. And I guess he needs another one now.


----------



## my little penguin

Yikes that would be tricky
I know for Egid kids the only way they know if a food is a pass or fail is a re scope
So every 8-12 weeks a scope to prove 2-3 foods

What does your Gi recommend for monitoring since you don't want it worse and anemia takes months to fix even if things are healed inside


----------



## Catherine

You should see an improvement in the anemia (at least we did).  How low is his haemoglobin level?  The lower in is the quicker you should see improvement.


----------



## Clash

The after scope moment with the GI wasn't long enough to encompass that. Usually, we have a followup to go 9ver biopsies and this time lab work since he did regular work up, iron studies and some tests the rheumatologist wanted done. I should get the schedule followup call tomorrow.

The GI did say C is always full of surprises and hard to read without scopes He also said we have to find a way to effectively track whether shortening the schedule of humira is helping and not lag on it too long but offered know specifics of what he was thinking.


----------



## Clash

His last ferritin was 2 but HGB was only slightly lower than normal, I think. I would have to go back and check.


----------



## Maya142

I've read the same about Entyvio - they are using it at our Children's Hospital but mostly for UC and only if multiple anti-TNFs have been failed.

Clash, the thing about Ferritin is that it is an acute phase reactant, so even if it rises, it can be falsely high because of inflammation. M's is usually sky high - way above the upper limit, so it's easy to tell when it's inflammation with her.

I guess scopes would be the best option but I'm sure C would hate that idea!


----------



## Catherine

In c case I would expect the ferritin to rise along with the hemoglobin.  

When ferritin is acting as acute phase reactant you would usually get a rise in ferritin and hemoglobin would stay the same or fall.

You also need iron studies further than ferritin alone.


----------



## Clash

That was from his previous iron studies done 6 weeks ago. More than ferritin was done and some of the others were low as well. Ferritin was the only one I could remember off the top of my head.

I'm hoping the iron studies done at scope last week come back today. But I guess it could be longer or they wait for biopsies and release it all at once.


----------



## Tesscorm

S's HGB also indicates when he has active disease.  We saw a quick jump when he was on EEN (from 106 in end of May 2011 to 133 in August).  It began to drift down again when he was on supplmental EN only.  But again, steady improvement after starting remicade - from 125 in January 2013 to 148 in Aug.  (It still fluctuates a bit - likely everyone's fluctuates a bit - but all within normal range now.)  It's not an immediate indicator but, if it will take a few weeks to determine if weekly humira, possibly, small improvements in HGB will be an indicator??

My friend, whose daughter has crohns, once mentioned (couple years ago...) a different test her GI does...  I mentioned it here and no one had heard of it being used to indicate inflammation.  I think Dusty responded that, while it does indicate inflammation, it's not a test that commonly used for that purpose.  Ugh, I can't remember waht it was but I will look through S's thread and will ask my friend (unfortunately, she doesn't usually follow every result so she may not remember??).  I will try to get this test name for you! :ghug:


----------



## kimmidwife

Following with FC's and iron levels every few weeks would probably be a good idea and then maybe a re scope in 12 weeks?
I will be curious to see what the docs plan is.
According to our Doctor the entyvio does work into deeper levels but just takes longer to do so then remicade. In fact he was very pleased with the biopsy difference between Caitlyn's scope in April vs October.


----------



## Clash

Okay gurus I have a question.

So non IBD child had her wisdom teeth extracted, iv sedation, followed by oral pain meds and phenegran.

Hers were a difficult impaction the oral surgeon said and she has needed the pain meds on schedule every 4 hours since.

Starting 2 days ago she's had sharp LRQ pain. It has gone back and forth between dull and sharp. At one check during the last 2 days her temp check was 99.1 the rest of the time it has been normal.

I feel like the miralax has constipated her. She can't remember if she's had a bm since surgery on Friday but we know she hasn't since Sunday. 

She had a dose of miralax yesterday. And two so far today will do another this afternoon.

How long should it take for miralax to work. Has anyone included a stool softener in with miralax for constipation?

If we don't see results by tomorrow we'll head to urgent care I guess.


----------



## Maya142

M had her wisdom teeth out a while ago. She was on Vicodin, took it every 4-6 hours for a week or so. She also had belly pain and nausea with the pain meds and took Miralax on the second day after the surgery. Took another day to work and she continued to take it daily until she was done with pain meds.

Now she's on pain meds for her arthritis and we've learned that if Miralax doesn't work, to use Milk of Magnesia.

Your poor girl - sounds like her teeth were pretty badly impacted! M had local anesthetic but no sedation at all - not even laughing gas! That wasn't the smartest decision because she was so shaken by the whole ordeal that she nearly fainted right after the surgery.


----------



## Clash

Yeah, I had laughing gas with mine. My hubby just had local. He literally remembers the dentist putting his knee in his chest for leverage. Ummm no, I would've freaked!

C has a xrays and cleaning in January and the dentist has already said he'd be referring C to the oral surgeon for extraction because his are coming in sideways. We've been waiting to see if what the thing is the bud of the fourth one is ready or something.


----------



## CarolinAlaska

I would recommend prune juice.  I used to do pain management in a former life... it seemed to do well for opioid induced constipation.

My oldest nonIBDer will get hers out next week.


----------



## Clash

Automated results came through. The Rheumatologist had already put an order in for these labs and gave me an order. Both GI and Rheumatologist are part of the same system so I assume GI will look at them tomorrow (he was out of office today). The results don't look good to me but I have no idea what they mean.

This is most of CBC, didn't post the rest as they fell in the Normal range or didn't have standard range. Next post will be the iron studies.

Component	Standard Range	Your Value
WBC LABCORP	3.4 - 10.8 x10E3/uL	*10.8*
RBC LABCORP	4.14 - 5.80 x10E6/uL	*5.14*
HGB Labcorp 	12.6 - 17.7 g/dL	        *11.7*
HEMATOCRIT 	37.5 - 51.0 %	                *37.3*
MCV                	79 - 97 fL	                *73*
MCH.              	26.6 - 33.0 pg	        *22.8*
MCHC.            	31.5 - 35.7 g/dL	        *31.4*
RDW.               	12.3 - 15.4 %	                *17.5*
PLATELETS 	        150 - 379 x10E3/uL.     *302*


----------



## Maya142

Seems like he's a little bit anemic. Is he still on Entocort? Wondering if that can raise WBC like Prednisone does...

How is your older daughter? Feeling any better with the Miralax?


----------



## Clash

CMP results
Component	        Standard Range	   Your Value
GLUCOSE, SERUM 	65 - 99 mg/dL.        *71*
BUN LABCORP	        6 - 20 mg/dL	          *12*
CREATININE, SERUM 	0.76 - 1.27 mg/dL  *0.87*
BUN/CREATININE RATIO 	8 - 19	          *14*
Sodium, Serum.      	134 - 144 mmol/L	  *140*
POTASSIUM          	3.5 - 5.2 mmol/L	    *4.3*
CHLORIDE, SERUM.     97 - 108 mmol/L	    *103*
CARBON DIOXIDE, TOTAL 	18 - 29 mmol/L.  *20*
CALCIUM, SERUM.       	8.7 - 10.2 mg/dL	*8.6*
PROTEIN, TOTAL SERUM 	6.0 - 8.5 g/dL	       * 6.7*
ALBUMIN, SERUM.        	3.5 - 5.5 g/dL	        *4.0*
GLOBULIN, TOTAL.       	1.5 - 4.5 g/dL	        *2.7*
A/G Ratio Labcorp	        1.1 - 2.5	                *1.5*
Bilirubin Total LabCorp	0.0 - 1.2 mg/dL	*0.4*
ALKALINE PHOSPHATASE, SERUM 	39 - 117 IU/L	  *78*
AST (SGOT) LABCORP	0 - 40 IU/L	        *16*
ALT (SGPT) LABCORP.  	0 - 44 IU/L	          *6*


----------



## Clash

He finished entocort a couple days before scope.


----------



## Clash

J is still complaining of abdomen pain and no bm yet.


----------



## Clash

Oh since it was Rheumatologist that had the order for these the ESR was done and it was 19 range 0-15.

What hasn't shown up is the iron studies which should've been ordered by GI.


----------



## kimmidwife

Clash,
Did she try prune juice?
How is her pain?


----------



## Clash

On this pain scale








she says she is a 6.


----------



## Clash

Yes and apple juice and since yesterday evening 4 doses of miralax.


----------



## Maya142

:lol: M loves that pain scale. No real advice except that constipation has caused some pretty bad belly pain here.

Do C's joints feel ok? I'm guessing the elevated ESR is the IBD?


----------



## Clash

I'm not sure Maya142, his wrist has been bothering him for several days (started 2 days after rheumatologist appt) and has only calmed a bit today. But that wouldn't raise ESR would it?


----------



## Clash

She hasn't taken any pain meds now for 7 hours. I really don't know what point she needs to go to urgent care or ER.

It's very tender to the touch, hurts more if jostled and such. She hasn't eaten anything but a container of jello today.


----------



## CarolinAlaska

Clash said:


> Automated results came through. The Rheumatologist had already put an order in for these labs and gave me an order. Both GI and Rheumatologist are part of the same system so I assume GI will look at them tomorrow (he was out of office today). The results don't look good to me but I have no idea what they mean.
> 
> This is most of CBC, didn't post the rest as they fell in the Normal range or didn't have standard range. Next post will be the iron studies.
> 
> Component	Standard Range	Your Value
> WBC LABCORP	3.4 - 10.8 x10E3/uL	*10.8*
> RBC LABCORP	4.14 - 5.80 x10E6/uL	*5.14*
> HGB Labcorp 	12.6 - 17.7 g/dL	        *11.7*
> HEMATOCRIT 	37.5 - 51.0 %	                *37.3*
> MCV                	79 - 97 fL	                *73*
> MCH.              	26.6 - 33.0 pg	        *22.8*
> MCHC.            	31.5 - 35.7 g/dL	        *31.4*
> RDW.               	12.3 - 15.4 %	                *17.5*
> PLATELETS 	        150 - 379 x10E3/uL.     *302*


Low MCV means the red blood cells are small.  This can be iron deficiency or anemia of chronic disease.    Elevated RDW means more than usual new red blood cells being made.


----------



## Clash

Why would there be more than normal red cells being made?

I don't know if any of these are at a point where C would need further investigation. He's had wonky results before and of course I get panicky but the GI seldom says more than there's definitely CD activity going on...which we already know at this point.


----------



## CarolinAlaska

More cells being made because the body recognizes that it is anemic and needs more to carry that oxygen around.


----------



## Clash

Okay talked to the GI nurse. Iron doesn't automatically post but she did say that his iron numbers have come up a little bit like ferritin went from 2 to 7.

She wanted to schedule a follow up appt for this upcoming Monday but C wants to schedule for 1st week in January or later so it won't interfere with work schedule.

Nurse said GI definitely wants to give humira weekly a shot but doesn't know how long we can give it due to his latest results of progression. 

Daughter still feels bad with some abdominal pain, still doing miralax has had 1 small bm.


----------



## my little penguin

You did explain unwanted hospital admit 
Tends to mess with work schedule more
AND
Big and
If a doctor asks for a sooner appt it's for a reason 
Not because they like to see a smiling face
They are very busy 

So glad my kid is only 12


----------



## Clash

I told C we needed to jump on the first appt available and the reasons and he was fine with that as long as it gave the work scheduler enough time. So I'm thinking it will be the first week of January.

The GI was going to wait out the weeks of weekly humira with local blood tests and to call if things worsened but I wanted C to talk to him so he could understand the importance of weekly humira, compliancy and what not.

GI nurse thought the sooner we get C in the better for "the talk" about weekly humira, compliancy and even though you feel good outwardly your results show you need to be careful taking care of yourself during this flare.

Stubborn teen.


----------



## Maya142

Really sorry Clash - it's so hard when they grow up. They're still scared and kids inside but of course, they think they know everything.

I hope hearing it from his GI helps. Sending hugs :ghug:.


----------



## kimmidwife

You are right about stubborn teens they are so hard!
Hope your daughter is doing better!


----------



## Tesscorm

Sending hugs...  it's walking a tightrope with teens! :yfaint:  

:ghug:


----------



## Optimistic

Sorry Clash. It is very hard to co-drive with a teen and in your case adult...but co-driving is only way to do it. Ugh.


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## Clash

We will be going to urgent care today, C has run fever with his cough since yesterday. Last check 100.9. His GP is out of town this week so I figured we'd go ahead and wade through urgent care. Am I right they they should be able to do a quick strep (as well as the couple day culture)? And for the flu is that a quick test as well? And urgent care clinic would have that right?

I can't remember from the last time but do they allow our kiddos tamiflu if it is the flu? I remember everywhere being out one year and us calling multiple locations but I can't remember if that was for C or my non IBD daughter.

J will be calling the oral surgeon Monday as she still doesn't seem to be recouping quickly and hasn't moved past soft foods. 

To top off this fabulous 12 days of Christmas adventure that included colonoscopy and wisdom teeth extractions same day different towns, bad scope results, weird reaction to meds, and now fever bound IBD kid the Hubby had to work Christmas day and a deer (fortunately not one of Santa's apparently since it was earth bound and not soaring the skies) totaled our car. Come on 2016 hurry up and get here!


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## crohnsinct

Oh no!  So sorry to hear of all this clash!  Hugs!  

One year my niece was at our house and had flu. She was sleeping with o in her room. Our ped said no tamiflu unless she definitely had flu as it causes gi distress and she didn't want to aggravate her crohns. So yes they can take it but it could be rough on gut. 

I think in order to test or was it treat the flu you have to catch it in first couple of days. I would think urgent care can test for it. Ours definitely could with niece and they definitely have tested for strep. Poor C!


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## Maya142

Oh geez Clash! Those were an eventful 12 days!

I'm guessing urgent care would test for the flu. Ours definitely does the Strep test because we've taken M there for it.

I'm glad J will be calling her doctor. Poor kiddo, she shouldn't still be so miserable.

Thinking of you guys :ghug:.


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## my little penguin

Tamiflu needs to be taken within 48 hours of first symptoms of the flu otherwise it doesn't work
Only shortens the course by a day or two
That said Ds has had it before due to asthma and the flu a few years ago

I thought only ER could do flu test since it was nasogastric swab
Maybe since he is 18 it's different 

Strep swab can be done for sure 

Flu should have a much higher fever in general though so hopefully just a virus
Adenovirus can also cause issues


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## Clash

So C had 100.9 last night before bed. He took tylenol, so that was about 11:30. He woke up about 10:30 took his temp, no fever. He has plenty of energy and a strong but productive cough. He wants to wait and see other GP in the practice instead of urgent care due to wait times.

The deal we've made is if fever comes back its urgent care today if not he can make appt. He doesn't feel achey, miserable yucky and says other than the cough no real complaints. 

He says he knew his fever had broke over night because he woke up at one point covered in sweat. Since it has so far only been in the evening and doesn't seem associated with a achy, yucky sick feeling I wonder if is his CD and the cough he's had is sinus/allergy? I mean he is getting up flegm, there's no sore throat. Ughh I just don't know.


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## my little penguin

Strep typically doesn't have a cough
Just severe sore throat. High temp and belly ache
Glad the fever broke

If he has allergies could be post nasal drip irritating his throat causing cough 

Nightly fevers would seem more ibd or SpA
If they disappear during the day 

Good luck 
Hope he feels better


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## pdx

Oh man! Hope both your kids are feeling better soon. And sorry about the car, too...


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## CarolinAlaska

Yes, most urgent care places can do all those things.


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## kimmidwife

Oh that is so crazy! 
it can't hurt to go to urgent care and get checked out. Keep us posted on how he is doing.


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## Sascot

What a shame, hope he feels better soon!


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## Clash

Fever is back now. I'm going to call tomorrow for a GP appt. Weird that it showed up in the evening again, maybe it is connected to the CD. But we need to know I guess before the humira shot.


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## CarolinAlaska

Clash said:


> Fever is back now. I'm going to call tomorrow for a GP appt. Weird that it showed up in the evening again, maybe it is connected to the CD. But we need to know I guess before the humira shot.


It is common for fevers to come in the evenings if they are going to come.


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## Clash

In C's case, it has been that with flu, strep, virus etc he'd carry a fever throughout the day and it would get higher toward evening/night. When it was a fever due to CD he'd only have it during the evening, sweat it off during the night then start over the next evening. That's why I wonder if it's CD and C is finally showing symptoms with his flares.


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## Maya142

M is the same with arthritis and with Crohn's -- fever in the evening. Usually goes up to 100.2 but sometimes higher.

But since he has the cough, I'd get him checked out if he'll agree to go to his GP:ghug:.


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## Clash

Yep, definitely going to GP, actually another in the group since ours is out of town but need to ensure we can do the humira shot.


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## Optimistic

Clash, I hope the dr can figure this out and get him some relief fast. He needs to enjoy his last week off from school. 

And you need all of this to settle. Enough to deal with already. Sorry about the car. 

Good luck.


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## Clash

Lucked into an 11am appt. Getting ready to head that way. C woke up with ear pain today so we'll see what the doc says.


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## Clash

It's an infection of some sort. Little to no chest involvement. Zpac and something for cough tussalin. No humira or mtx until no fever for 48 hours. 

GI nurse called to say she had put in an order for another iron infusion.


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## kimmidwife

Sorry to hear hope he gets better quick!


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## Maya142

Oh no, hope he feels better soon with the antibiotics!

Glad they put in another order for an iron infusion - hopefully that will help get his iron up and will help it stay up! M needed 4, I think. Maybe 5.


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## my little penguin

Did they do bloodwork and check ears ???
Hope it clears quickly


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## Clash

He looked into his ears. C says his ears feel full. Doc saI'd something about sinus infection. He was really vague, talked about some crud going around. Then said he definitely had some type of infection. If he doesnt feel much much better by Thursday then he has to go back. No bloodwork this trip.


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## my little penguin

Just checking we went through something similar for an ear infection that turned mastoiditis 
Bloodwork clued us in before he got too bad but no one looked at it till after he was admitted .
If abx don't work in 48 hours go back and insist on bloodwork 
Ds went through two sets of abx and fever was gone quickly but he kept getting worse


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## Clash

Ok will do, thanks. He didn't have fever again today until a bit ago. I'm hoping this passes quickly!


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## my little penguin

Good luck fingers crossed it goes away soon


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## Tesscorm

Wow, Clash, you've had so much going on!!!  

I hope C is feeling better today and this is quickly gone!

Lots of hugs!!! :ghug: :ghug:


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## Clash

Okay guys My Humira is driving me freaking insane. We have the humira nurse that was calling every so often. She called at the most random times and with C's schedule he could never talk to her. He gave permission for the specialty pharmacy and nurse to talk to me. The nurse calling was getting a bit aggravating because she'd want to know symptoms he was having that went along with the tests for active disease. Every time we had to go through the whole he's asymptomatic thing.

Before Christmas I started getting automated calls from the nurse line wanting to speak to C. He was never home when the call came through so I'd have him call back and he'd get no answer or it would say leave a message with your question! He didn't have a question. It stopped for 2 weeks and had now started back at all hours. 

GI is supposed to have sent px for moving to weekly and syringe so waiting to hear on that. I appreciate My Humira, for sure, but remistart was soooo much less hassle!


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## my little penguin

We never get calls from my humira 
Not sure why your getting calls even when he increased from every two weeks to 10 days to once a week .
Only had to talk to them once 
Make sure you get it escalated 
When you place the first once a week order the specialty  pharmacy will get a rejection from my humira ( they only cover one box every twenty eight days)
But they can't do an escalation until they get a rejection
The escalation is suppose to take three days to process and approve 
Will see I get to try it tomorrow 
Tried to do it end of last year but since Ds was past oop Max my humira wasn't covering anything and we had to wait for a rejection


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## Clash

So My Humira isn't going to cover the weekly humira?

I didn't even think of that. Wow, we haven't paid but five dollars so far. I'm not aware if our px has an out of pocket max right now. I do know there is one with the next contract but it hasn't been ratified and hasn't started yet.


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## my little penguin

They should cover it but you have to have it sent in for an escalation and they have to review it.
We had to do it when Ds switched to every tens days. But our specialty phamacy didn't tell us there was an issue for 2-3 months so we had a very large bill at that point that they suddenly sent to us and weren't going to ship any more meds. Had less than a week to get it all figured out 
It was a disaster since the pharmacy waited so long .


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## my little penguin

Make sure you call about it 
The phamacy can't send in the claim to my humira until after they ship it.
So you need to follow up closely with the billing sept afterwards and with my humira as well
Very very tricky


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## Clash

Okay thanks I'll make sure to call my humira tomorrow.


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## Clash

You know, that reminds me I think the nurse said she was sending it through encompass and we go through cvs specialty pharmacy so I need to call the GI about that as well because last time it delayed everything.


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## Tesscorm

These conversations give me so much anxiety!!  Both when starting EEN and remicade, it was handled by GI's office and all ran so smoothly.  I dread if/when S has to switch.  Just the thought of ever changing jobs scares me with the uncertainty of knowing how the transfer will happen from one insurance coverage to another.

People don't realize how much more, beyond the illness, comes with a chronic diagnosis.

Hugs Clash...  I hope you can get it sorted out quickly and easily. :ghug:


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## Clash

So it was an eventful day. C should've recieved his next shipment (his 1st of weekly humira syringes) last week or first of this week. Nada.

I called the specialty pharmacy and they said that the Co payment assistant program rejected it. I asked was it My humira and they said yeah. 

I'm thinking no way we can pay for weekly humira without My Humira (now called humira complete maybe). So I called left message with GI and the my humira nurse. 

GI nurse calls back first and says doc is going to get another letter together and they are contacting their Humira advocate because it's probably unaffordable without the assistance program.

Humira nurse calls me back, connects me with pharmacy solutions then Opus who state to have specialty pharmacy call them and let them know it was rejected and they'll issue them an override code.

I call the pharmacy, I'm batted around 4 different times then connected to a most wonderful lady. I explain it to her and she's trying to figure it out. And then she asks "So you just don't want to pay the 20$ copay so you can get it this week?" I said I'll absolutely pay a 20$ copay I just want the humira this week. She's said ohe no problem you'll have it Friday, My Humira just wouldn't pick up the 20$ copay until after the 29th. Well then here's my 20 and send it on!

Btw, this may be nothing but for the last week I've seen an increase in what C eats in a day. He's been on the weekly humira a month so fingers crossed!


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## my little penguin

Keep after opus
Call them every day and the speculate pharmacy billing department 
Ask for an escalation they are suppose to take 2-3 days to approve it
Then once they do you won't have it rejected for weekly again
Best last year
I called son many times in the begging of January to the speculate pharmacy 
It was escalated and approved by opus within  2 days
Thankfully he is at max dose so won't have to do it again 
Good luck
Make sure they email or text when the shipment goes out 
I have been told oh it will ship xyz 
Only it didn't due to rejection of my humira opus 
So stay on billing dept


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## Maya142

Glad he's eating more!! That's always a good sign!

Is he trying the syringes with Lidocaine now?


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## Clash

MLP, I wonder if this will happen again because the pharmacist said she thought it was due to the doc starting C on weekly humira with the shipment he had already recieved when it was biweekly then it was a week before the new script went out.

Opus said theyou had a bad batch of cards a while back that sent out rejection immediately when px changed or insurance changed. They felt they'd corrected the problem for the majority of them but it would be no problem to correct.

I'm assuming the refills will now be monthly (or that is what pharmacist stated) so I'll call again next month to make sure it works. 

Maya142, we are supposed to discuss the lidocaine at the appt with GI in the first part of Feb.

Also hell get his labs done this week too. Hoping everything looks better anemia wise!


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## my little penguin

They like to fill every twenty eight days so two boxes every twenty eight days 
You can get it shipped up to one week prior to your next shot date 
Saves you if there is a glitch in shipping


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## Clash

C did his first syringe injection of humira. He said it was still painful but much better than the pen.

Labs were done Friday locally lab quest. I really hope they're available for GI appt Thursday.


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## Maya142

Glad he did so well! I'll have to tell my older daughter .


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## Clash

Maya142, I don't think it was near as bad as the injector pen. I haven't been watching C with the injector pen because that tends to get him worked up but I watched last night and he grimaced a bit at the beginning and said now I can definitely tell it's the med that causes the pain but controlling the rate helps alot. So I'm happy with that! Hopefully, his feeling of dread a couple days before injection will now fade away!


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## Tesscorm

These kids/young adults deserve lots of admiration!  They really are faced with so much more than the average person and, somehow, they find it in themselves to tackle it!  I don't blame him for beginning to dread a couple days before - hope this helps him!


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## Pilgrim

It's a tough med psychologically. Sounds like he's working through it.
ETA - my little one still dreads it a yearinto treatment.


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## my little penguin

Has he seen a psychologist ?
A few sessions on CBT can make a huge difference for the dread that comes from humira shots.
Which can be helpful coping skills for other painful processes 

The difference was night and day for Ds 

Good luck


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## Clash

Hopefully, the dread is gone with the intro of syringe. He was happy with how it went.


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## Maya142

How big is the needle Clash? Was he bothered by it?

 I really want my older daughter to switch - she is not a big fan of the pens, but says she doesn't want to see the needle with the syringes. I feel like if it is less painful, she won't care about the needle (she does her own MTX shots and has no issue with the needle!).


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## Clash

C uses a very small needle for mtx like 8mm, 31 Guage. The humira needle didn't look to be but maybe half again as long an not much thicker.

C noted it was longer than his mtx needle but only in a casual way but then he hasn't really had needle issues since starting the remicade and mtx.


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## Clash

GI appt today.

Ferritin still really low. Bi weekly infusions

He's checking into the lidocaine thing.

C will have a scope in 3 months to see where we stand unless C starts experiencing symptoms then we call.

The labs hadn't been released to the portal by appt time. They were done last Friday but locally, when done by GI lab they post after a day or so. But I'll get them soon enough.

I didn't think about when he gets these biweekly iron infusions when should labs be done so guess I'll ask when the GI nurse calls about the order.

Overall, went well. I really like C's doc he's always ready to help and open to strategies. Just wish we could get this kid into remission!

Hope all is well with everyone.


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## kimmidwife

Clash,
Right there with you!


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## Tesscorm

Sending lots of wishes that this gets him into solid remission!!!  No one wants to see their child suffer but so disconcerting when they don't show symptoms too!  It leaves you so blind as to what's happening.   But, I really hope this time, no symptoms means no inflammation!  :ghug:


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## Clash

I was going to mention a couple of things the GI discussed. He just attended a conference.

First off, this is not verbatim, as my brain is entirely to much mush for that but just a sum up in my words.

Research and treatment of late has come around to focus on levels of biologics as they are seeing that response is strongly tied to that. There is no set level but more nuances for each patient and finding that seems to line everything up for long remissions.

In the med pipeline, a biologic that directs to affect more than one cytokine. There is some excitement about this because it is widely believed that those that are getting partial response to say remicade are doing so because there more than one main driver of their disease process. There are, of course numerous, ones affecting the direction of inflammation but with studies (for remicade) they showed that a majority of patients have tnf as the main driver and blocking it is why most find quick symptom reduction and steady remission. I don't know if this was the actual drug he used or just an example but he said tnf and another cytokine.

The main issue has been that most GIs are concerned with too much immune suppression if they place a patient on two different biologics. The study of this upcoming med could answer those questions and possibly open doors for those who are failing the big guns with only partially response (like C).

If there was anything else it's long gone, I swear my brain never retains all of what we discuss and notes do not help because it's like leap frog from one subject to the next between my questions, his newest conference and C'S interjections! They should offer a glass of wine on the way out...along with a parking validation!


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## Sascot

Very interesting. Always good to hear of new meds on the way. Wishing remission for your boy!


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## CarolinAlaska

I hope the new plan works for C


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## Clash

The lidocaine came in today. So we'll start it with this Sunday's shot.

Question. Why would you have to mix it with the humira at all. Why couldn't you just push the lidocaine then do the shot?

Or does lidocaine hurt as an injection too?


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## Maya142

M has lidocaine injections for her tube changes. She said it hurt - stung - but not as bad as Humira. I don't know if those are exactly the same though. She was also sedated while they did them, but she remembers them hurting.

I'd ask my little penguin - she knows everything!


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## Clash

Maya142, do you remember what guage needle M used for methotrexate injections?


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## Maya142

30 gauge, I think. Very very thin - so thin that we were worried they'd break while she was injecting (she actually wanted the thicker needles we'd had earlier back).


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## Clash

C'S are 31 guage so I guess even thinner? He started with one in the 20s and he didn't like it. The pharmacist is the one that suggested 31 and I didn't think to question it.


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## Maya142

Yes, that's thinner. Ours were either 30 or 31, I can't remember. We never had any problems with them - they just looked very delicate! Barely hurt at all. I'm sure he'll be fine and will prefer them to the thicker ones.


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## my little penguin

Lidocaine just numbs the surface of the skin if you inject it separately
It DOES NOT change the ph of the humira and therefore doesn't change the "burning" feeing when it's injected separately.

You need for the two drugs to actually "mix" in the humira syringe in order to change the humira's pH so that the humira burns less.

I know it sounds like a pain to mix but honestly once you get a routine that works for you takes seconds to do 
Trust me I tried the inject separately thing as well figuring it was better than humira alone
Nope just extra burning shot ( although not as bad as humira) and still did nothing at all
To affect the humira med burn 

Ds uses 27-28 gauge needles to draw up the lidocaine but they are only use to inject the lidocaine back in the humira so never touch his skin


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## Clash

Ok time for a blood work update and some tidbits the GI nurse told me about.

C had his blood pulled last Thursday and ferritin levels were improving as was HGB and other weird labs values. So we stay on the same iron infusion course. CRP and SED were normal.

The nurse said the Humira drug rep had come by and Humira is working with a ph change in hopes of making the shots less painful.

Second, another drug rep was by with a lidocaine thingy that when opened to air absorbs to the intramuscular level when placed on skin. She put C at the top of the list for consideration. And when she gets all the literature she'll update us.

Anyway, that's all I have for now. I'm a bit worried that C may have done the labs too soon after having an iron infusion(he had the labs on the off week between infusions) but we'll  keep moving ahead with them since he's not in normal limits still.

I have my fingers crossed that the humira is maybe getting the job done and we'll have good scopes to look forward to in June.


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## Maya142

Very cool about the Lidocaine thing. Also that Humira is trying to make the shot less painful! We'd all love that!

Glad things are getting better - fingers crossed that C's scopes look better too in June!


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## my little penguin

That is very very cool news
Hope things improve soon


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## pdx

Thanks for sharing--that's great news about possibly making Humira shots less painful.  And good to hear that the lab values are going in the right direction.


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## Clash

C's scope is today. His last labs showed that the weekly iron infusions were working or at least all his numbers were in normal range. He was moved to monthly iron infusions.

The GI ordered the patches to try with humira. C should do the first one this Sunday.

I'm not sure that this patch is specifically for humira but it is supposed to numb deeper than topicals. GI nurse said to try it and let her know.

I'll update after scope.


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## Farmwife

I hope all goes well for him.
I'm interested to see if the patch works.


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## Tesscorm

Good luck today!  Hoping for good news!!


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## pdx

Hope it goes well and you get good results!


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## Pilgrim

I hope it went well today. I'm also interested in the patch. I read on another thread someone tried heat on the area before injecting instead of cold and it worked like a dream - as in no pain.


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## Clash

The patch actually has a warming component too.

Scopes went well results were what we figured there is active disease. We wait on biopsies, GI and rheumatologist are going to discuss. GI wants C to start entyvio and may be that he has to also stay on anti tnf for his joints. Follow up in two weeks.

I was expecting the results we got but it still took every thing outta me for today.

I'll let you guys know how the patch goes, it'll be Sunday when he takes the next humira.


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## Maya142

We might join you soon and put M on two biologics too. 

Sending HUGS :ghug: -- I wish scope results had been better.


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## Pilgrim

How long for your biopsies?


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## Clash

The biopsies will be back next week. The nurse said she'd call with the results even though we have a follow up 2 weeks out.


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## crohnsinct

Literally held my breath as I opened this thread!  

I am so sorry.  I know you were expecting this but it still doesn't make it any easier.  

FWIW - my nephew did not respond to anti tnfs but he is doing very well on Entyvio.


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## my little penguin

Big hugs 
Always hard to hear even when you are expecting the results
The verbalization of them make them too real


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## pdx

So sorry to hear this, but I guess it's good to know what's going on.  I really hope you find a treatment that works well for your son!


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## Sascot

Really sorry to hear that. Hope the next step works better


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## CarolinAlaska

Sorry to hear it.  I can feel the maddening frustration with you.  How is C holding up?


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## Tesscorm

Clash, I'm so sorry that the news wasn't better. :hug:  And, I can certainly understand how upsetting to hear, even if you expected it.  I'm sending lots of wishes that his GI and rheumi can find a solution that gets him into solid remission.  I know his crohns is usually asymptomatic, which helps a bit, but I know you can't be in peace until he is truly in remission.  I'm just so sorry he's not there yet.

I hope you get the biopsy results soon so you can move on to the follow-up and decide on a plan moving forward.  Lots of hugs!  :ghug: :ghug:


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## awmom

Gosh Clash, I''m so sorry to hear this...I know how disheartening it is.  How is C doing with the news?  I do hope the Entyvio is the magic bullet for him and you can both have a little peace of mind.


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## Clash

It's hard to say how C deals with it...outta sight outta mind is my best guess. I think it's a product of being asymptomatic.

I just really haven't processed it myself. I'm waiting on a call back from the rheumatologist so I can discuss it all with her. And the the follow up with GI is next Tuesday. He's supposed to have talked with rheumatologist as well.


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## Clash

We had C's GI follow up yesterday. In the time between scope and follow up the rheumatologist balked at the idea of two biologics (still trying to discuss with her but through the nurse so it's a waiting game).

Biopsies weren't good, granulomas and micro granulomas throughout, including colon which was visibly clear.

Thanks to Maya142, I went in wanting to discuss stelara instead of entyvio since it doesn't treat JSpA. The GI was very open to it and was going to discuss with a colleague at Janssen. He said he had two patients on stelara and fail but that was at the lower dosing and that the new study arm with higher dosing has shown good results.

I'll update when we hear more.


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## Tesscorm

Hate that the biopsies weren't better... I know it didn't come as a complete surprise but still... :ghug:

Have you discussed the stelara with his rheuma?  Would she be willing to try it?


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## awmom

So sorry to hear about the biopsy reusults.  It's so good to go into appointments with some knowledge and suggestions (with help from this forum!!) so you can have more options.  Hope you find something that works really soon.


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## Clash

I haven't mentioned stelara to the rheumatologist yet as conversations are taking long times since I basically give the nurse questions and concerns then she calls back a few days later with Dr responses.

I don't think that she'd have issue with stelara since it has had some positive results with the arthritis side. I read one study about it and it seems another may be occurring now?


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## Optimistic

I'm just catching up on this and I HATE to hear what has transpired!!

I really hope Stelara will be approved and make a difference. You and C both have my awe, admiration and respect in how you deal with this.


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## Clash

Aww...thanks. He's not saying much other than he doesn't think anything is going to work. I think the number of let downs are piling up. But today he called and was upbeat about some work stuff and an upcoming getaway so it made me feel a bit better.


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## kimmidwife

Clash,
Sorry to hear. I hope the stelara will work for him. Not helping the joints is the one big downfall of entyvio. Caitlyn still gets a lot of joint pain all the time.


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## Tesscorm

A bit delayed in my response :blush: but I can understand his frustration and your worry. :ghug:

S was feeling the same way over the last year, with all those varied issues he's had....  we'd barely have an answer to one question when another would come up.  He was getting frustrated, upset, disheartened, etc.

I feel for C (and you)...  it broke my heart when S would say it was hard and he was tired of seeing his friends out and enjoying life and he was always saying no because he felt badly or just didn't feel like going out because he was depressed about the latest symptom (or lack of answer).

I don't know how much it helped him but, when he was especially down and expecting 'nothing' from the next test or specialist, I just kept reminding him that life is long and there are periods of not so great times...  sometimes they last just a few weeks but sometimes it can be much longer.  And, when taken in perspective of an entire lifetime, they are just short periods...  Kept reminding him that everyone has these tougher times, whether related to health or other reasons...  you just have to remember they will eventually be in the past.  Also reminded him that, unfortunately, getting to the final answer takes time and some turns...  sometimes you simply can't avoid the time it takes to try and rule things out. 

Like I said, I don't know if it helped him at all...  at the time, it didn't seem to have much of a positive impact (but, you know what boys are like...  a positive sign can simply be the lack of an 'eye roll'!) but...  there was really nothing more I could do but try to help him be patient until the next apptmt.

I hope things start moving ahead for C!!!  Thinking of you both! :ghug:


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