Flare up while on maintenance Remicade?

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

 

 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