Has Remicade ever made you WORSE?

No never has.

Hmm that's odd...perhaps you were headed for the flare in the first place? I know that my Remi starts to wear off at about the 6 to 7 week mark (I go every 8 weeks). But, normally after my infusion - like literally the next day, I'm right as rain again.

I was on Remicade for about 8 months. It never ever kicked in fully and got me to a good place. I was still going to the bathroom too much and had bloody D. about 6 months into it I got much, much worse. I was going to the bathroom 20 to 30x a day, with accidents and I was just really ill. I kept hoping the next infusion would help but that never happened. My doc finally pulled me of of it and I decided to go forward with surgery.

@Allswell - I also get issues with Oral Thrush (ongoing for almost a year) due to Remicade, Prednisone & 6-MP. I've taken 2 courses of Flucanazole but they don't seem to make a dent in it. I know that it won't go away until I stop the immunosuppressants but I'd rather have oral thrush than a flare up! My thrush does get worse after an infusion and I'm wondering if the infusions make the thrush worse and it's gotten into my digestive system now; and that that's the cause of the feeling worse and NOT UC? Thoughts guys?

@garylouisville - I have been suspecting this as it does seem odd I flare around the same time every year (almost to the day). However, I just attributed it to exam stress as I'd be hospitalised a day or two before my first exam (happened this year and last year). Also, I'm on 6-MP, Asacol, Prednisone & Remicade and they all are slowly failing on me. On top of that after two colonoscopies and biposies, the doctors have said they're not able to determine whether it's UC or Chrons (after 2 times! But they did say they were 99% sure it was UC). What allergens affected you? Could you please elaborate?

My allergist rates allergies on a scale of 1 to 4 where 4 can be life threatening. The worst I scored was 2 with a bunch of them being fall pollens and molds, just when I had my troubles every year. After starting allergy shots my autoimmune disease went away and it has stayed away for over 10 years. It's possible yours is due to yearly stress but you may want to check out seasonal allergies in your area to see if some correspond to June and then get tested. It's also possible your diet changes to a summer diet at about that time.

gavin: I never got any normal allergy symptoms such as runny nose, itchy eyes, sneezing, etc but I did get yearly sinus infections every fall. Every fall I would have a relapse of my autoimmune disease along with a sinsus infection. A relative told me every year for years that I had allergies but I emphatically denied it telling them I have never had allergies and didn't then, just sinus infections. After several years of this happening every fall I began to warm to the idea of getting tested for allergies. I asked my autoimmune doctors if they thought there was a connection in it all and they all laughed at me. Finally I went to my GP (who was also laughing) and he agreed that it wouldn't hurt to get tested for allergies so we set it up. I was shocked to learn that I not only had A LOT of mild allergies, but many of them revolved around fall pollens and molds, just when I would relapse every year. The allergist then began treating me for allergies using various nose sprays and meds. Didn't seem to help my autoimmune disease at all. After thinking about it a lot and still getting laughed at by my doctors I was able to talk the allergist into giving me allergy shots. They start out at a very low dose, gradually increasing it. In the very beginning I didn't notice much but as the shots got stronger and stronger, my autoimmune disease got weaker and weaker. After about a year of slowly getting better my disease just disappeared and I got the last laugh over my doctors. I still get allergy shots to this day to keep my first disease in check. That was over 10 years ago and I've been doing fine ever since, except for now coming down with UC two years ago. I'm about 100% sure that my UC is caused by the Epstein Barr Virus residing "dormant" in my colon, causing an autoimmune attack which is inflaming my colon. My UC first started while I was in the hospital for Mono. Since most doctors don't try and find out the cause of UC (and other autoimmune diseases), only treating the symptoms, no one ever gets cured. I cured my previous bout of autoimmunity because I treated the cause, not the symptoms. I am now going down the road of trying to treat my EBV infection to get rid of my UC but, unfortunately, there is no known way to irradicate an EBV infection. Since you have a clue as to possible causes of your UC if you try going down that road you may eventually find the exact cause and be able to treat that instead of merely treating the symptoms of UC. I wish you luck.

Post Edited (garylouisville) : 9/11/2012 6:33:34 AM (GMT-6)