Flare up while on maintenance Remicade?

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/5/2008 12:25 PM (GMT -7)   
My husband (who has had a very difficult course with c-diff and crohn's) is now home, and starting to get slowly better. He's now having mushy stools, and is tolerating a low-residue diet, and is slowly starting to get his strength back (he lost 35 lbs in the past 2 months). Anyway, he's now on remicade (he's still in the induction phase, and is due for his 3rd infusion on May 22), and on 80mgs of prednisone, plus asacol, colestid and flagyl and vancomycin for the c-diff infection.

My question is about remicade - for those of you on remicade, do you get flare ups? If you do have a flare up on remicade, does that mean remicade is not working for you? I don't know if I'm phrasing this correctly.

1.) If you are on a maintenance dose of remicade (every 8 weeks infusion), have you experienced a flare-up?
2.) If you do experience a flare-up while on a maintenance dose of remicade, does it mean remicade is losing it's effectiveness? Is this when you start moving doses closer (like every 6 weeks), or double dosing?
3.) If you do experience a flare on remicade, do you take steroids to try and help?

My husband seems to be recovering ever so slowly. His diet now consists of low-residue foods (vanilla ensure, pedialyte, chicken, hamburger patties, SCD yogurt, plain pasta, plain white bagels, eggs). He does seem to be slowly gaining his strength back, and his stools are thicket - if you know about the Bristol Stool Scale, he's having type 6 stools, rather than type 7 diarrhea. Before coming home, the doctor did a colonoscopy and found that his inflammation is about 40-50% better than before. So there's some improvement. I just want to know what to expect on remicade - is it supposed to keep you in remission as long as you're taking it, or is it supposed to be something you take along with pred as needed to fight flare ups?

Thanks for your help and clarification.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 5/5/2008 12:35 PM (GMT -7)   

 I will be having my 4th remi on the 12th, I had a flare after my 2nd and am now on pred and taping from 60mg to 20 mgs now. They told me it could take 3 or 4 treatments to start working. I am hoping it will work. I know I need to be off pred for a while before I will be able to tell if it's working. Hope you get the answers you need.

 SherriB64@comcast.net


 


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 5/5/2008 2:44 PM (GMT -7)   
 
 
 PV,
 
I think that everyone has a unique experience with remicade. I used it for three years after a remission I was in started to break down.  In my first year, the remicade reduced the flares to 1-2 per year and they were fairly easy to deal with.  As I was in grad school at the time, I would use prednisone for a few days to get over them when they happened (40 mgs/day for 2-3 days).  Could eat and drink normally after that. By year 2, they were becoming more frequent, say 4 per year.  By year three, we had to start increasing the frequency with which I was getting it from every 12 week to every 8 weeks.  We even tried adding a few other meds.   In my case, I was stricturing, building up scar tissue that was narrowing the space inside the bowel.  Remicade reduces inflammation, but does not repair stricturing.  So, you can flare while on remicade especially if the disease is diet sensitive and you are building up scar tissue. Ultimately, I had surgery to remove my ileum. 
 
1) So yes, you can flare on remicade. When my disease was inflammation based and not scar tissue based, remicade worked to reduce flares and make the 1-2 per year I had easy. I would ask your GI to give you an idea of how much scar tissue is there and how much inflammation is there. That will give you an idea as to where you are headed.
 
2) When you move the doses closer togther it does mean the effectivenes is reducing. Again, it may be scar tissue and not inflammation. The other problem is that people develop auto-antibodies against the remicade. They effectively neutralize the remicade making it ineffective. So, more remicade is required to acheive a therapeutic level. This is very common and varies per person.
 
3) I always used steroids to help with flares. It made life easier. Allowed me to go to school, work, etc.  Usually I would notice improvement in 4-6 hours after taking them.
 
Long answer, but I hope it helps. Hang in there, I know how ya feel.
 
ajz
 

kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 5/5/2008 7:49 PM (GMT -7)   

PV,

I must have started remi the same time as your husband because I am due for my third treatment on May 23. I have already started feeling better in that I have less stomach pain. I still have tons of arthritis, D, fatigue, and all the other blessed symptomes, but less pain. I am currently on 30 mg of Pred and wanting to be done with it. I am optimistic that remi is my answer and I think it will be for your husband too. He sounds sicker than me and that is hard for a family to deal with. I am lucky to have a great husband and you sound like a great wife. I guess I don't have much to offer but my prayers and thoughts for you two. I hope the remi is your families miracle as I hope it is mine.

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 20 mg/day, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 9 months.  

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