Question for Remicaid/Humira users with severe reactions.

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New Member

Date Joined May 2008
Total Posts : 2
   Posted 5/6/2008 5:15 PM (GMT -7)   
Hello all. New member/long time lurker here. I was diagnosed with CD back in 1993. I am 28 now, and as you can imagine, I have one of those telephone-book medical files. When I was diagnosed, and for most of my adolescence, I got passed around from GI specialist to GI specialist with what I was told was the worst case of CD most of them had ever seen (though I am SURE many of you here would also qualify for that dubious honor).

By my early twenties Remicaid was available to me. I was very excited, as I had tried nearly everything else and found steroids to be the only treatment that ever seemed to work. However, I reacted poorly to the first infusion in that I experienced uncommonly strong serum sickness/cirrocitus(sp?). A second infusion resulted in an obstruction and subsequent perforation leading to bowel resection.

My doctor now feels I may want to try Humira. She feels there are important differences between Remicaid and Humira that warrant giving Humira consideration (even taking in to consideration my poor reaction to Remicaid).

So my first question would be this: Has anyone here reacted similarly to Remicaid (uncommonly strong serum sickness/cirrocitus(sp?)) and gone on to try Humira? If so, what were the results?

I need also to mention this. I am now living with what I would call "mild crohn's". I have energy, I go to the gym four days a week, I am off TPN and eating a healthy diet (still have to avoid problem foods) and I keeping weight on. I am on no medication! Blood works comes back good (low sed rates). Other than the occasional cramping and diarrhea I seem to be virtually symptom free. She wants to prescribe the Humira as a maintenance drug to hedge against future flare-ups and calm what little inflammation I still have. I am have having a hard time convincing myself I need to take any risk at this point.

Question Two: What would you do?

Thanks for reading this long post. Your thoughts and time are much appreciated.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 5/6/2008 6:20 PM (GMT -7)   
Hi and welcome! I can't answer your first question as I am still taking remicade, and have been for 3 1/2 years now.

Considering how bad you have been in the past, I wouldn't chance not taking any meds. Damage can still be done without any symptoms, so when you do finally start having symptoms, you could be in for some big trouble. Humira seems a little strong to me to be using as a maint. med when you are having no symtpoms. What about pentasa or asacol depending on where your crohns is? I would save humira for your next flare. Imuran is also a good main. drug.

New Member

Date Joined May 2008
Total Posts : 2
   Posted 5/6/2008 9:03 PM (GMT -7)   
Thank you so much for the response. She recommended Humira because my CD is fistulizing. My CD is mainly in the Ileum. Have tried Pentasa with no success. I'll bring up Imuran at my next visit.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 5/6/2008 11:10 PM (GMT -7)   
Can you tell us more about your unusually severe serum sickness? What happened?


Co-Moderator Crohn's Forum.

Regular Member

Date Joined Dec 2006
Total Posts : 57
   Posted 5/7/2008 9:19 AM (GMT -7)   
My wife was put on Remicade after her resection of some small bowel.  After she recovered and released her, they put her on Remicade as a preventive med.
After 7 months, she developed terrible joint pain which later was proven to be caused by the Remicade. 
They took her off Remicade and put her on Humira.  She's been on Humira for 9 months with no sign of rejection and her crohn's is very quiet.
She also didn't have crohn's symptoms while on Remicade, but we don't know if she is in surgical remission or what.  Just hoping that Humira keeps everything in check, and it is so far.
Colonoscopy scheduled for sometime at the end of the summer.  We'll see how things are then...
If it was me, I would try Humira.  Understand that Remicade uses mouse proteins which, in my mind, would increase the risk of rejection.  There are no mouse proteins in Humira.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/7/2008 9:59 AM (GMT -7)   
I agree with BillyLitt about the mouse proteins. I think that makes a big difference. I had a reaction of hives with the Remicade but never had any ill reactions to Humira. It didn't really work :-(, but I had no adverse reactions!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

Forum Moderator

Date Joined Feb 2003
Total Posts : 15294
   Posted 5/7/2008 11:28 AM (GMT -7)   
I would not be medication free ever, you certainly need a maintenance medication. I am glad you are better. Susie

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