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Heard from Doc today

CarolinAlaska

Holding It Together
I disagree. Jae never showed any abnormal blood work when she was at her worst. She could hardly function with fatigue an FC was only around 690... Hope the MTX tweaking does the trick!
 
Difficult. For us as well, bloods always normal. I would think that FC is fairly high, hope the increase dose takes care of that. As for fatigue, it's really hard to tell. This is Andrews one remaining symptom that comes and goes. Other than having some liquid iron, they just say it's a combination of normal teenage fatigue added to having Crohns
 

Jmrogers4

Moderator
Had o's appointment today. She is only down 2 pounds now. All blood work normal. Gi says a 460 fc wouldn't cause crohns fatigue without anemia. He is not concerned. Says likely some inflammation but not much.

Maybe normal teen fatigue.

Not testing levels. Not tweaking dose or schedule. Just the increase to 12.5 mtx weekly.

Pull fc in a few more months.

He did agree to run thyroid and b12 at next infusion in 6 weeks.

Have at it.
Have to disagree here as well at least in our case this was close to Jack's
FC when we switched to Remicade. MRE showed all kinds of inflammation in the small intestine. All other labs were normal.
Fatigue was a major symptom at that time. Could be something else but hope the increase in Mtx takes care of the inflammation.
 

Maya142

Moderator
Staff member
M had an FC of 480 and her GI thought it was way too high. Fatigue and BMs at night were her symptoms at that time. Some abdominal pain. We added Imuran to bring it down since she was already on the maximum dose of Remicade.

I think at least Remicade levels are warranted -- 460 is not a normal FC!!
 
Yeah, I agree that it seems like more action is warranted with those FC numbers.

Sorry that you're dealing with so much inertia from your GI with both of your kids right now.
 
Hi well after fc came back at 370 I was told to up my 3mg of entocort (that I've been on since resection 2 years ago,also on 50mg simponi once a month which was going to be increased to twice a month but then had spontaneous bruising which is being investigated)to 9mg for a month and now I'm on 6 mg for 2nd month....had mri done a couple of days ago and ibd nurse rang to say mild chronic distal disease(I thought it strange mild and chronic could be used in the same sentence ha) also 2feet was removed in resection and only diagnosed late 2012..... Anyway..results are going to be discussed with the radiologists and comparisons done with previous imagings (I take it to include the 6 pilcams I've had in the last 2 years which ALWAYS showed active inflammation) to see what they're going to do with me.... Seriously hope another resection isn't looming
 
Hi yeah strangely ALL on the left,I know could be deferred pain but I do have AS as well so maybe my hip?asked doc a couple of weeks previous would small bowel mri show the decending colon and he said yeah, but nurse said it wouldn't?usual fatigue ,discomfort, but no overwhelming pain my bloods which were done last week as usual all came back normal but then even when I needed emergency resection inflammatory markers never rose sooooo in the meantime getting a hip X-ray done for rhemotology which I haven't an appointment for Til next MAY. Funnily I feel worse after mri strange stabbing pains in the upper stomach and on lower left also had bad pain last week between shoulder blades thought it might've been gallbladder but I'm sure that would've showed in mri? I already have bile malabsorption from resection and take cholestrymine for that and just to add I did the FC in July and only got results in September really annoying and another thing RELLY annoyed that on at least 3 times when I've gone on hospital appointment my file wasn't there and they didn't know where it was? God give me strength
 
Just a quick update:

O continued to have "things" going on here and there. Not the least of which was a toilet full of blood on one occasion and considerable blood and mushy BM's here and there. Fatigue and slow times with running continued as did urgent BM's and accidents when on runs.

B12 and thyroid tests came back fine.

Bleeding and mushy BM's come and go...currently gone. fatigue seems to do the same.

She has not lost any weight and her most recent FC is 260. GI is pleased with the reduction in FC and has agreed to let her go back to her 10mg dose of Mtx. She will be moving to injections because the 12.5mg dose made her sick and now she has a problem swallowing the pills.

GI is putting the bleeding and mushy BM's down to mini flares that are stress induced. This despite the fact that she is not stressed what so ever.

She still has never had any small bowel imaging done.

Most recent sed rate was 28...normal up to 20 so not terrible but she usually sits around 9.

So long story short seems we have one of those GI's who is comfortable with "some" inflammation an believes in blips.

Thinking about seeking out another doc but just tired right now. O also has a hip issue we have been dealing with since September and her sister is still not in remission and dealing with rheumy issues so maybe when the dust settles I will start looking.
 
So sorry. And yeah, I agree that a second opinion would be a good idea, but I also totally understand the amount of time and energy that takes. Good luck, and I hope that both of your girls are feeling better soon. :ghug:
 
Sorry to hear that. Definitely worth a second opinion once you have the mental energy to deal with all that. Hopefully the added methotrexate will do the trick though.
 

Tesscorm

Moderator
Staff member
Sometimes there are just too many balls to juggle! I certainly don't know what's right or wrong but, you might remember, when S was with his ped GI, his office told me they often see 'some' inflammation in kids?? Maybe, when all else is under control, ped GIs prefer to see if initial symptoms resolve themselves before moving to change treatment plans??

In any case, totally understand that you sometimes need to let the dust settle and regroup before taking on a new challenge. :ghug:
 
Hi guys! Sorry we disappeared. Lots going on.

For starters, O continued her mush, bleeding and accidents nonsense. At one point GI said proctosigmoiditis as she has always had inflammation in her rectum. We tried topical foam and that made things worse so stopped. Doc wasn't to concerned and O had to have surgery on her hip in January so that was the primary concern. Got her through surgery and her nonsense continued. Pulled FC and it was 1130. Had scopes and there was inflammation and it spread to her TI and a little in her duodenum. This was pretty disappointing because all her inflammation was stomach/colon/rectum up to that point. Her Remi levels were just 5 so we upped her Remicade a bit. Her nonsense continued and in August her FC was 137... normal. So even though there is no pain with her accidents and frequent (we are talking could be 20 times a day) bathroom trips, and extreme fatigue, she hasn't lost weight, has pretty much stopped bleeding and has a normal FC so she now has an IBS dx.

In other news, we have moved. We are no longer in CT. However, we are in California so I guess I can keep my nickname CIC!

T is doing well. Her rheumy has ruled out any issues there with her pain and we saw pain management who told us she has amplified pain. We were having her seen to learn various coping mechanisms, got a gel and a tens unit. She still has joint type pain but feels less stressed about it knowing that it is nothing. She is on Remicade...I think you guys knew that and for the first time ever got a 50 fecal cal without the use of EEN so we are super happy.

O is at college clear across the country in the southeast. Just broke her wrist and tore some ligaments. But otherwise doing o.k..

Both girls are getting home infusions which O thinks is just the greatest thing ever because it interrupts her life the least. T is about to have her first one next week.

We didn't like the GI we saw here so are in the process of switching docs again.

I think that's about it. Off to change my profile to reflect the correct state/area.
 
Thanks for the update, CIC. I'm sorry that O had such a rough year. Hip surgery (and a broken wrist!) is a lot, but adding all the Crohn's issues sounds like a hard senior year. Do you think the IBS diagnosis is correct? Are there any plans for scopes in the next year to make sure that it's not really just Crohn's?

So glad that T is doing well on Remicade, and hope that you find a GI that you like in your new town.
 
PDX - I don't know what to think.

We moved to California a week before college started and tried to tour but she couldn't manage more than two half days out of the house. She spent the remaining days having lazy days at home.

We flew out to her school's town a couple of days before school started so we could buy all her dorm stuff. The poor kid couldn't get through a store without going to the bathroom at least 6 times. It continued all day. I actually picked everything for her. Then she was so fatigued she asked if we could just sit in the car and then asked to go back to hotel. At a time when she was supposed to be having fun and be so excited she just couldn't manage it.

I was sure her fecal cal would come out high but nope. Normal.

Absent elevated FC, abnormal blood labs or weight loss I have to accept the IBS dx but would be lying if I said I would be surprised if down the road we find out her Crohn's wasn't totally controlled.

She doesn't call home much and we never text about health. I figure there is nothing I can do from here so best not to know too much. She will figure it all out. I will see her over thanksgiving so will hopefully have a better read on things.
 
:ghug: Man, the college years have got to be hard (for parents, I mean!). You know that your kids have to start taking control of their health and health care, but they're still young too... Glad that you'll get to see her over Thanksgiving!
 

Lady Organic

Moderator
Staff member
I recently got a 66 FC and have 5cm inflamed in rectum. I was much faster than calpro to detect my flare. The sample I sent was with mucus and microscopic pieces of blood inside mucus, imagine... I know now FC is not of much use for me unfortunately. It has no predictive value for me, as my clinical symptoms alert me faster than FC.
Endoscopic factors influencing FC:
https://www.ncbi.nlm.nih.gov/pubmed/26351383

I'd try to repeat FC as soon as possible especially during a difficult day.
 

Jmrogers4

Moderator
What about an MRE? or did they do with scopes, pill cam? Certainly sounds like there is more going on besides IBS. I'm with you on the can't do much about it so try and let them handle it. It's so much easier to do that on things other than health. I just have to hope that like so many others on here that have kids who have already passed this stage that they were listening all those years and really do know more than what I think they know.
 
:ybiggrin:Welcome HOME!

I've decided to take the "Mother Gothel" approach and tell Repenzel it's not safe outside these walls.
That way I don't have to worry about her going to college. Lol

Same thing for Grace as lady organic. Normal FC count but scopes showed different.

So do you like your new state?
 
Lady: Interesting. My daughter's problem area is the rectum. I have read and heard that this is the hardest area to get under control and am now wondering if maybe it doesn't she as much calprotectin as say the colon?

Pilgrim: have I been gone that long that you have forgotten my favorite coping mechanism? :drink:

Farmwife: Good luck with that strategy but don't be surprised if you abandon it once she hits that terrible senior year!:ack: You might be begging her to go.

We like our new state but it is VERY different. Who would have thought same country and all but I guess going from one coast to another does have differences. Moved to a major city though so at least there is that! :ytongue:
 
We went to a new, new GI. We like this one. We went for T but I will brain dump his thoughts here.

He says FC limit for small bowel disease for him is 100. Over 100 he starts thinking about changing therapy. He takes FC at every infusion. He is a huge proponent of TIGHT control. He also takes Remi levels at every infusion. Likes to see 6 or 7 at least.

I told him about O and her goings on. He doesn't agree with the IBS dx. He absolutely thinks she is dealing with disease. He is going to see her when she comes home for Thanksgiving. He says her Remi levels should be at least 10. He is afraid that leaving her so low for so long may have caused her to start to lose response. Rectal disease is the hardest to control. Says when Cortafoam doesn't work Rowasa does and vice versa. So he will trial her on Rowasa and increase her Remi.

O happened to have her infusion that same day and her labs came back with high CRP and ESR. Old GI (her current one right now) asked about symptoms and sure enough, 10-20 times a day, mush, mucus and accidents. No blood. He has her on a short burst of Prednisone to try to reign things in.

Really?! Don't you just hate it when forum parents know more than docs?!

Looking forward to moving her care to new doc who btw agreed to overbook day before Thanksgiving to see her when she comes home.
 

Jmrogers4

Moderator
Glad she is seeing new doc he sounds great and hope she gets things under control. College is hard enough to deal with on its own.
I sometimes think we actually have more collective experience than some GI's.
I'm busy scheduling doctors, dentist, flu shot for Thanksgiving and Christmas break. Have an email into his GI as he has not had labs done since Aug. 7th.
 
I'm busy scheduling doctors, dentist, flu shot for Thanksgiving and Christmas break. Have an email into his GI as he has not had labs done since Aug. 7th.
Same here. All three of the four days she is home she has an appointment or two. :ybatty: O got her flu shot on campus. Did they not offer that at his school?

O's GI also skipped labs for her September infusion due to the fact that there are no in network labs near school. We did OON lab work at the school medical center this last infusion and thank goodness we did. I wonder if we did them in September if we would have caught this earlier.:confused2: Of course it might have helped if she reported her symptoms to someone.
#learningtoletgosucks
 

Jmrogers4

Moderator
Oh they offer flu shots I've been nagging and the health center is steps from his dorm, he walks right by it several times a day! learning to let go sucks is right!
He is sick now and didn't go to class yesterday, he called me from the store to ask what kind of meds he could have (silly boy I packed some cold meds in your first aid kit and I told you that). I know he must be feeling really bad because he had to be pretty bad here before he would miss school and I always kind of left it up to him - you know only you know how bad you feel and whether or not you can make it through school. Told him to take his temp with the thermometer that was in his first aid kit when he got back to dorm (No fever yeah!). Maybe now he actually knows what he has in there although he was standing in the kitchen with me when I packed it and telling him what was in there.
Was thinking we are going to have to do the same and have labs at the health center, his last infusion was Oct. 30th next is December 11th so I don't know if having labs over Thanksgiving break will give us good info.
 
They are hysterical aren't they. They can study and ace college bio, philosophy etc but when it comes to basic life skills?! :yfrown:

I always prefer labs at infusion this way you have the most accurate info at their lowest Remicade point. So much so that I am willing to pay the OON costs to do it:shifty-t: Does his campus med center have a lab? They tend to be really reasonably priced...that is if he could remember to turn his body 90 degrees and actually walk in.
 

Maya142

Moderator
Staff member
:lol: Jacqui, tell him that if he gets the flu, he will be missing a LOT more than one day of classes. My nephew, who is also in college, skipped the flu shot last year because he "never gets the flu." Famous last words! He got the flu and was so sick that he missed 3 weeks of classes.

College classes move very quickly and as Jack will find out, missing even one day is tough to catch up from. 2-3 weeks and it becomes VERY difficult - my nephew had a horrible time catching up and actually had to withdraw from a class, because he just couldn't get caught up.

Remember, this was a healthy kiddo - not one on Remicade. With Jack, he's likely to get sicker and could develop complications like pneumonia. And it may mean a Crohn's flare.

College students are definitely tough - they know everything, until something goes wrong! Then they want Mom to magically fix it ;).
 

Jmrogers4

Moderator
They do, He goes to school at the "med school" for the state it's where they have PA program, pharmaceutical etc. so yes full lab. It is literally the next building to his dorm.
He just registered for classes next semester and I had to laugh at what he signed up for and told him just maybe he should ease back a little. He signed up for Bio 202, Chem, Applied Calculus and Mandarin Chinese (I talked him into dropping the Mandarin Chinese at least for this semester since he doesn't need that for his degree and taking a "fun" class- B.S in Biology with a concentration in biomedical science- What?! :yfaint: Stresses me out just thinking about it.
 
Your new GI doc sounds great, CIC, and it's wonderful that he was willing to fit O in over Thanksgiving. What's her Remi dose right now?
 
You would think I would know! But alas I don't have access to her portal anymore because in the eyes of the law she is all grown up. I am in the process now of coaxing her to fill out the necessary paperwork to get me access or at least get her to look up the info I want.

But I think she was around 6mg/kg so there is lots of room to go up but the issue is more that she has symptoms all the way through the interval so that points more toward losing response. If it was a dose issue, she would feel good for at least a few days after infusion then start to slide. Unless the dose is so pathetically low that it never works. Which if new GI is right and she needs a remi level of 10, could be the case.

She also stopped mtx back in late spring so maybe that has something to do with it?

OR SHE HAS IBS:ylol2:
 

Jmrogers4

Moderator
So she is fairly near base dosage but I guess I would think there would be less symptoms if not complete relief at least around infusion time.
Jack just gave me his password cause it was easier that way, he knows I'll keep pestering him with questions. 🤣
Hope you get answers and I’m glad she is coming home for thanksgiving do you don't have to wait longer or have to fly out and take charge.
Sample some of that California wine in the meantime to make the time pass 🍷
 
LOL JM! Don't you know I moved to Northern CA near Napa and Sonoma and then the wild fires hit. What a cruel, cruel twist of fate. But there are still plenty to see. It is my civic duty to spend my money supporting that devastated region. Is there no end to my giving?

True text convo:

O: Mom can you deposit money on my dining card
Me: what's in it for me?
O: I will make you dinner when I come home
Me: nah
O: Unpack boxes, paint?
Me: nah
O: then what?
Me: user name and password
O: I will get a job
 

Maya142

Moderator
Staff member
:lol: CIC she is really going to drive you nuts over these next 4 years. It's a good thing you moved to wine country!
 
My daughter went off mtx last year and flared a few months afterwards. When we tested her levels during her flare, her Remi levels were low, and she also had low but detectable levels of antibodies. Her doctor put her back on mtx and upped her Remi dose, and now she's back in remission, with good Remicade levels and no detectable antibodies. Hope that it works for your daughter too!
 
This new doctor sounds amazing! I hope you get some time to tour around. That part of California is gorgeous.
Keep us posted on how it goes.
 

Jmrogers4

Moderator
:rof:
Love that area I have a cousin in Santa Rosa (he was about a mile from evacuation zone) and my younger son goes down there every spring break for a rugby trip.
Jack's reasoning if I'm looking he doesn't have to thus making his life easier.
 
Happy Thanksgiving to all our friends in the USA!

O came home from school. She started her prednisone taper. Down 5mg per week. She looked great. Energetic. Chatty etc. A few days into her first taper down she started having to run to the bathroom urgently but we chalked it up to a one off.

She had an appointment with new GI yesterday, who said she looks anemic. He palpated her abdomen and he said she guarded and winced when he got to her ileum. He said he thinks she has pretty active ileal disease. Ileal involvement is relatively new for her. Previously just entire colon and rectum and stomach.

His initial plan was to let old GI handle steroid taper and add Uceris and try to tighten up her Remicade schedule. No Rowasa because of the dorm issues. However, after the exam and further detective work, O admits still going frequently and urgent about half the time and painful TI area.

So new plan is his handles everything. She is to report how taper goes and we will probably increase her back up to get her through the end of finals. Remicade every 4 weeks for the next threee months until she is well healed. Then we slowly try to move it out.

It is possible that she is losing response but he wants to give it every shot we can before we switch therapies. Interestingly enough, he also really wants her on monotherapy so no adding an immunomodulator.

O woke up this morning bleeding. So she will let him know tomorrow and I fully expect she will go back up on steroid level. Bummer that she couldn't get past the first taper. Bummer that this is all happening within 4 weeks of last infusion. Bummer she goes back to school tomorrow.

Have to say it is awkward switching GI's in the middle of a flare.
 

Maya142

Moderator
Staff member
What was the reason for monotherapy?? Just curious, since combination therapy seems pretty common now.

Really hope he can get O feeling better ASAP :ghug:. It is so hard to send them away to school flaring - I hate doing it and my daughter is only an hour away.
 
I second Maya. Why didn’t he want to try adding methotrexate or something?
I hope he can get her flare under control quickly. It is hard when her school is so far away.
 
Put O on the plane back to school last Friday. Leaving her on that TSA line was quite possibly the hardest thing I have ever done. How does a mom walk away from their flaring kid?

But she is back at school now and reportedly doing pretty o.k..

New GI has decided to move her to 10mg/kg every 4 weeks (far cry from the 6mg/kg every 8 weeks eh) and reassess in 3 months. Based on her "all good" reports, he is letting the steroid taper continue. We will be pulling blood and stool labs every 4 weeks.

I am curious to see if this is a levels issue or a loss of response. If levels I would think that at least the first few days after infusion she would see symptoms improve. But maybe not if there is that much less Remicade.

Come on Remicade!

I didn't get a chance to ask why the monotherapy. I do know he is big on minimizing drug burden and she was having these symptoms even on MTX last fall and winter so maybe those two things had something to do with it. But I will definitely ask when I see him next with T.

Will keep y'all posted.
 

Jmrogers4

Moderator
So tough letting them go in the best of circumstances much less when they are not 100%. Hoping the increased dosage and frequency does the trick for her. (and feeling good before finals).
Keeping my fingers and toes crossed for her XXXX
 

Tesscorm

Moderator
Staff member
Have you considered a round of EEN? It's what kickstarted her remission last time with remicade... but, of course, EEN would be much tougher being away at school... :(
 
Oh I considered it alright! Even went so far as to suggest it. She balked. First it was the logistics. No car on campus. Going to the market to buy cans of formula and get them back to dorm. I offered to buy them on Amazon and have them shipped and then there was the "how will I get them from mail room to dorm room. In the end I think the bigger issue is the stress of finals, long hours etc...she is just going to want to eat her comfort foods etc. I sort of don't blame her.

I wish she had a longer break but her break is only 4 weeks long. Three of those weeks she is back east visiting friends and family and the other week travelling to CA and then back to school. So I am afraid it would even be difficult then.

She got down to 10mg of prednisone and symptoms kicked up a bit. GI asked her to go back to 15mg for another week and try to taper after that.

He also said maintenance therapy will take some time to get momentum. Bummer.
 
Hey y'all. As promised, I got that monotherapy (Remicade only no Methotrexate) answer.

He said it all comes down to pharmacogenetics. This simply means the way people process and respond to a drug. He said years ago they only dosed standard doses of Remicade. 5 mg/kg. But what they learned was people metabolized it differently. So there were sharp peaks and valleys of drug in their systems. The goal is to keep the drug somewhat steady and lasting the whole interval. The peaks and valleys are bad and the valleys will cause antibodies to form. They found that adding methotrexate helped increase the amount of time that Remicade stayed in the body, keeping things more even. So yes, methotrexate helps with antibodies but not because of anything in Methotrexate as much as what it does for the Remicade.

Now they know so much more about drug level monitoring and optimal dosing etc. There are wide ranges of doses and various intervals. They also know that colonic disease usually requires more drug and that active inflammation sops of the drug more quickly. High dose and short intervals doesn't necessarily mean that your disease is worse it just means your body is processing the drug very quickly.

Now the theory and it has been proven in many studies (which btw he is sending me), is if you maintain drug level properly you will prevent antibodies. So if you are doing this well, you do not need the Methotrexate and with pediatric patients why burden the body with more drug. With teen girls why take the added risk with possible pregnancy and with teens in general why take the risk with alcohol?

I told him about a boy I know who months after dropping mtx started building antibodies. He asked drug level and I told him zero. He said that's the problem. The GI dropped Remicade but then didn't properly dose and monitor the Remicade.

I am quite pleased with this GI's vigilance. I do have a good amount of guilt over O's case. Her old GI was clearly not dosing her enough. We had been telling him about issues for two years. Who knew there were docs like this out there who would listen. Oh well. The past is in the past. Onward and upward.

O is now in her last week of prednisone at 5 mg a day. I imagine next week will be every other day or at least that is what she has done in the past.

She got her first infusion at 10mg and it actually worked out to more like 6 weeks with insurance, scheduling issues. So now it is just a waiting game.

She is currently travelling and I will see her on Christmas and travel with her for two weeks then back to school she goes. She had a great semester even with the IBD, fractured wrist etc.
 
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That is very interesting and makes sense to me. When we added mtx back into my daughter's treatment, we measured Remicade levels soon after, and the mtx did cause the Remicade levels to go up.

I think it is still not known what is better for long-term health: higher dose Remicade alone or lower dose Remicade + mtx. Certainly the second choice is cheaper, given the high cost of biologics. But as you said, the first choice is better if there is a chance of pregnancy or alcohol use.
 

Maya142

Moderator
Staff member
I think it also depends on what EIMs your kiddo has. For example, if you have a child with arthritis as well as IBD, then keeping them on MTX would make a lot of sense since it will help control the arthritis as well as the IBD.

My older daughter had good Humira levels when they were last tested - some time in the summer I think (she was on weekly Humira then). But every time she tried to wean MTX, her joints flared.

Same with my younger one - whenever we tried to take her off an immunomodulator in the past, her arthritis flared. She really does need both.

I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.

That said, my older daughter tries to wean herself off MTX pretty much yearly - especially in college when "everyone drinks!" (according to her anyway).
 
But what they learned was people metabolized it differently. So there were sharp peaks and valleys of drug in their systems. The goal is to keep the drug somewhat steady and lasting the whole interval.
This was the reason for the every 2 weeks of Remicade for Grace. This is what the rheumatologist believes. I was sceptical at first if the ever two weeks would work but Grace seems to be improving slowly.
 

Jmrogers4

Moderator
Don't have much to add on the mtx since it wasn't an option for Jack when he started remicade but we have certainly played with interval and dosage with Jack, we seemed to have hit on a good regime for him right now although he was just saying he would love to move out to every 8 weeks but I think he is in such a good spot I'm reluctant to rock any boats.
Enjoy your time with O. Merry Christmas, Happy Hannakah and all :
 
I think if you are just using MTX to prevent antibodies, then you have a better chance of being able to get rid of it. But if it is for arthritis or psoriasis or something else in addition to IBD, then MTX makes a lot of sense.
Great point. My daughter developed Remicade-induced psoriasis after she dropped mtx, and it's mostly gone now that she's back on mtx.
 
Forgot to mention (that's to the pm'er for reminding me). O's FCP came back normal. Lab didn't report an actual number but normal works for me...for now. Also labs from infusion all normal. So looks like steroids did their thing and hopefully Remicade keeps her there.
 
Oops! Sorry. Fecal calprotectin was NOT normal. It was actually closer to 1500. This was after 5 weeks of steroids and 6 weeks out from last infusion. O must have read the portal wrong. Blood labs were normal though and you all know how much I love those.

She was only home for 2 days. Traveling visiting family and friends the rest of the time. But we caught up with her out east for some of it.

She went back to school on Monday with lots of weird goings on. GI thinks she may have steroid induced adrenal insufficiency. Put her back on steroids. She also is going to the bathroom a lot and has some bleeding. Second higher dose and 4 week infusion is this Friday. Hoping it kicks in soon.

I think the plan is to wait another infusion cycle to determine if she is losing response or not. GI mentioned possible scopes. No clue when those might be unless he has an extra long scope that will reach across the country not likely anytime soon:ylol2:
 
Started class yesterday. According to her she is fine!

I have gotten way more texts about a sorority rush event tonight and what she should wear and how she looks and accessories than I ever have about her Crohn's. The kid actually woke up early, finished a 6 minute video project and ran downtown to shop for a skirt because the one she ordered didn't arrive in time. She showered, saved her legs (sorry boys), did her nails and is ready to go to class. Gets out of class at 4:45, event is at 5!

But she can't seem to find time to walk "clear across campus" to get her hat and poop jars from the lab. PRIORITIES MOM! :ybatty:

Fecal ca supplies weren't the only casualty of the day...she also put off buying her books:ylol:
 

Jmrogers4

Moderator
Total priorities! Have I told you about the flu shot he was supposed to get at school from the place he literally walks by 5-6 times a day! I did bring him when he was home on break took a total of 10 minutes which I commented to him about how quickly they can do them. His comment "yeah, but to be honest it wouldn't of happened" Not because he didn't know it was important just not a priority for him UGH!!!
Does she text you pictures of outfits? Jack will send me a snapchat asking if "this goes together"
 
Jmrogers4: that is so flippin adorable! I expect it from girls but too cute when a boy asks his mom!

Farmwife: yeah I knew you would appreciate that. I slipped another one into a different thread just for you.

Tomorrow is C diff test, FCP, blood labs and infusion....hopefully O worked her way over to that terribly inconvenient medical center to pick up her Remicade! But LOL, jokes on her. The school lab only processes FCP samples Mon - Wed and she missed the Wed cut off so now she has to wake up super early to catch an uber to drop off her sample clear across town so she could get back in time for her 9 a.m. class. No time to do it after as she has infusion. Hopefully she has learned her lesson!
 
So O got her second infusion on the new plan last Monday.

Her fecal calprotectin came back at >2500. Some labs are falling and the velocity has picked up.

Still on steroids. Now at 10 mg. GI says his priority is to get her off steroids but he is going to do that very slowly.

He also says we need to give the new dosing about 3-4 months to take affect and until her levels are optimized he would expect cal pro values greater than 1000.

He did say that in cases like this he likes to see the kids monthly but her distance is complicating that.

She was in med center Monday watching her for possible pneumonia or flu.
 
There is but there really are no doctors near her school. Nearest decent GI is 2 hours away and that wouldn't be a problem IF she had a way to get there....guess who is getting a car for her birthday....that or a transfer to a west coast school!
 

Jmrogers4

Moderator
Oh I hope flu/pneumonia doesn't rear its ugly head and further complicate matters and that new schedule works wonders and it's just a matter of allowing more time.
 
I vote transfer. She is way too far away from her GI and family support. She sounds too stubborn to do that though!
 

Maya142

Moderator
Staff member
I vote transfer closer to home ;). I'm pretty sure she won't listen but you can tell her the committee has voted!

And maybe tell T that when the time comes, she should choose a college that is driving distance from her GI!
 
Good news! Looks like O just had some weird virus thing as she got better throughout the week.

Don't ask me how her Crohn's is, I have sworn off asking since GI is set on waiting another few months. Ignorance is bliss!

T has a four day weekend coming up so we are going to fly out there to see O. Otherwise, we wouldn't see her until mid May because she is going away for spring break.

O actually asked us to come down. She has even asked if she could stay with us in the hotel for the three nights we are there. Nice how she saved me the trouble of asking her!:thumright:

I will let her know the forum consensus on the transfer! :shifty-t:
 
Well, we saw O last week. She looks good. Tired but good. She was going to the bathroom about 10 times when she was with us so I imagine a bit more than that over an entire day. But no blood so we are making progress. Tapering to next level of steroids starts tonight.

She was supposed to have her infusion tomorrow but once again her flaky home infusion nurse can't make it. They had to reschedule to Thursday. I texted her that I was miffed at him and that I recently read that a delay of as little as four days for infusions could risk falling out of remission.

Her response?

"well then, good thing I am not in remission".

LMAO! The kid has an answer for everything! Oh yeah and she vetoed the committee vote to have her transfer. She wants to stay another year. But we did get her to concede that she would miss some of her her spring break trip to come home and have scopes IF the GI asks her nicely AND IF he agrees to do it on a Monday to Friday so she could either fly home later in the week OR come home and then meet her friends after scopes. This was actually a committee members suggestion! I let her think she came up with it. :shifty:
 
Hey y'all! Just wanted to let you know it looks like we have recaptured response to Remicade!

O's latest FCP is <16! We have never seen anything this low ever! As a matter of fact, T accused her of using someone else's poop!

The GI said this could be due to steroids and the increase in IFX. He said the situation is still tenuous and we will continue to get calpro every 4 weeks.

I am good with this and in the spirit of all we always say, we are enjoying the good for now!
 

Maya142

Moderator
Staff member
Mine has been down to 26 or so. I don't think she has gone down to <16 but that's the goal. But she has mild Crohn's.

But crohnsinct's daughter has severe Crohn's and she has gone down all the way to <16 so it is possible!!

Pilgrim, VEO IBD does tend to be aggressive, but the goal should be as low as possible. Especially now that there are treatments like biologics.

Our GI said she used to want kids with IBD to have FCP under 300-350 when they were just beginning to use biologics. That used to be considered excellent.

Now she aims for <50 because there are much better treatments, tests to optimize them (levels and antibody tests) and more treatment options (different kinds of biologics for example).
 
Pilgrim...us to! O has had disease for 6 years and T for three and we have never been below 160's and often over 1,000.

Maya is correct on all counts. A couple of other things to remember. Young children naturally have higher fecal cal pro. Older people to...like 65 and older I think. But not as high as H can get. I think they just mean a little higher like in the hundreds.

It is amazing how changing to this doc got O to this point. We dealt with cal pro in the 500's for two years. T also. IDK if it is the change in docs or that they just know more now. Either way I am a fan.
 
Well in the category of it was good while it lasted...O's next FCP just came in and it is 786. The funny thing is I feel bad for the GI. Poor little guy thought he licked this thing. Was planning to discuss de escalation at the next infusion. I feel like I am going to have to console him.

Don't ask me what the plan is. She is already at a little more than 10 mg/kg. Maybe add back in Methotrexate? She hates it. Maybe switch to Humira or Stelara?

Her appointment and infusion is 5/14. I will let you all know what he says. I go to get her next week!
 

my little penguin

Moderator
Staff member
Humira takes 3-5 months to work
Using steroids as bridge
Painful shots as least for a bit

Stelara takes 6 months to work
Steriods as a bridge
Shot every 8 weeks
90 mg
But Ds needed every 4 weeks
Shot does not hurt
 

Maya142

Moderator
Staff member
Humira shots might be painful for a while...as far as I know, they are only releasing the new formulation for pediatric patients first and O is over 18, right? She may get the new formulation since she's with a pediatric GI but also might not.

Plus, besides the initial press release, I haven't heard any more about it, though I REALLY hope AbbVie is releasing it, because it's been out in Europe for a couple years now I think.

I think MTX is worth trying if she is willing to do it. It will mean no drinking - not sure she does drink, but if she does, then her doc should have a serious talk with her about it before putting her on MTX.

That said, my older one, S, drank in college on MTX. In fact, still does drink though much less now that she has grown up (thank goodness!). Always had perfect liver enzymes.

I know she hated the pills, but what about the shot? It is basically painless. Just a quick poke - the medication does not hurt.

Humira - the health center could do it for her if she wanted. They could also do Stelara. We considered setting that up for my older daughter because there was a time she hated doing her own shots because they burned so much. But when she got to college, she decided it was much less work to just do it herself.

With the loading dose, my daughter took 2 months to respond, the second time she was on it. But she also started with weekly Humira (since we knew she'd need it, based on her first trial of Humira) and with an immunomodulator.

The first time it took 6 whole months to work after we had added MTX and made it weekly.

I'm so sorry to hear her FCP has gone up :(.
 
So sorry. Glad that the school year is over soon. Will she be home for the summer?

My vote would be for adding mtx before changing meds entirely. My daughter responded quickly when we added it back. (She might end up being on it anyway, even if she does switch biologics.)
 
I am sure she drinks on occasion. Not a lot because she is a self proclaimed swim and study nerd but I know she goes to parties and she has drank. If mtx is brought up I will let the GI hammer that point home.

Mtx will also mean birth control. This GI is a stickler about that and doesn't take abstinence for an answer (with the college age girls).

She HATED mtx and honestly it didn't do much for her IBD in the past but she also was at a lower dose of IFX so maybe it will be just the boost she needs.

I am not sure suggesting EEN is even an option because she was on steroids and they got her to remission and then she went right back up.

She is coming home for the summer so we have 14 weeks to get this sorted out.
 

Maya142

Moderator
Staff member
Oh yes, both my girls got the speech about birth control. Younger one was put on it because of menstrual issues when she was quite young, but my older one's rheumatologist suggested it when she went to college.

We had no issues at all with birth control. It really helped my younger daughter's cramps, which were debilitating and it made her period more regular (until she became severely underweight). It also made her period lighter which was good because she is always anemic anyway.

For my older daughter has also said it helped her cramps, which were pretty bad too.

For the Pill, she will have to take it at the same time every day...speaking of compliance ;). No issue for my girls because they already take meds several times a day so it was just added on.

But the app mentioned on another thread, Pillboxie, might help if she is put on it.

I am surprised this GI mandates it - I know all docs talk about it when girls are put on drugs like MTX and some suggest it, but I have never heard of a doctor insisting on it. What if a family is opposed for religious reasons? No MTX?

There is also a risk of blood clots with the pill and there is a risk of blood clot with Crohn's....for us it was worth it because both my girls had such bad cramps, but if they did not, I don't know if we would have agreed to it. I would expect the doctor to trust my daughters...
 
Well he mentioned it in general discussion so I imagine there is some room for discussion. But yeah, he had a college aged boy on mtx who was pledging a fraternity and there was quite the discussion about "are you drinking? tell the truth". It ended with, "you know what? You only have one liver and I can't take that chance. We are dropping mtx. o.k.?" The kid agreed happily.

No app will help O take her meds. She is a ridiculously smart and responsible kid with everything but taking meds. That alert would go off, she would be in the middle of something and silence it with every intention of taking it. Then go about her day forgetting all about her pill. I think it is like you mentioned in the other thread. If the consequences are immediate then they are more apt to take them. But with Crohn's the consequences aren't always immediate. Plus with mtx she is actually rewarded for forgetting because then she doesn't feel like crap.

Well, I will have her home for 14 weeks so maybe we can get her into a good habit and find a good time to take the mtx.

The thing to remember is our family has bad livers and O had chronically low abc on mtx so not sure he would opt for it again.

What a cliff hanger!
 
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