Moving on to Humira

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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!
 
: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:
 
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.
 
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
Click to expand...

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!!
 
No idea on the S word... but really glad all went well and that humira is doing its job!! :D
 
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!
 
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?
 
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!
 
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.
 
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!
 
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!
Click to expand...

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

Dusty. xxx
 
Glad things are going well. Dreading the day my son starts seeing someone! Although it does sound motivating, lol
 
I'm so glad all is going well!! There must be lots of excitement building around college! :D

And, lol, re the girlfriend! Amazing what they can accomplish! ;)
 
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!!
 
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.
 
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!
 
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.
 
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!!
 
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?
 
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!!!!!
 
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.
 
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.
 
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.
 
Oh Man! Sorry about those labs! President of the FC Fan club also says pull a test. Can't hurt. :rosette2:
 
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.
 
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.
 
Clash said:
His rheumatologist thinks it's anemia of chronic disease. I think his GI feels the same.
Click to expand...

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.
 
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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
 
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
 
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!!
 
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 .
 
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.
 
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!! :))
 
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!
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
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?
 
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.
 
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!
 
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.
 
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
 
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
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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.
 
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.
 
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! :D)
 
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.
Click to expand...

Smart and thoughtful young man.
 
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!
 
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.
 
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.
 
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! ;)
 
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!
 
: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!!
 
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.
 
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!
 
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
 
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.
 
My patient: "I'm feeling fine." His wife: "No, he is not!" His colonoscopy: severe colitis. I think spouses are very sensitive biomarkers.
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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?
 
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.
 
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.
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:rof: oh my gosh, so funny!
 
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!
 
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!
 
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.
 
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.
Click to expand...
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. :(
 
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.
 
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.
 
Great news on the FC. Anaemia is an odd one. We struggled to bring it under control even in remission
 
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.
 
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.
 
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.
 
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?
 
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
 
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.
 
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
 
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.
 
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?
 
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!
 
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?
Click to expand...

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.
 
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
 
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.
 
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!
 

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