Posted 4/30/2010 6:18 AM (GMT 0)
Hello all. about two weeks ago I had my first Remicade treatment. I had a mild rash for a few days after the infusion but then on day 5 or so I broke out into a horrible, itchy rash and hives that covered my torso, face, neck, and my upper legs (despite taking benedryl 3x a day and being on 20 mg of prednisone!). After seeing the rash, my regular doctor wanted me to go on 80-100 mg of prednisone, but I declined (I explained that the whole reason I went on Remicade was to avoid taking steroids). We compromised on a prescription antihistamine and taking benedry ever 4 hours. Now, two weeks after the infusion, the rash seems to be finally fading but it is still not gone. The itching and burning are pretty uncomfortable, but definitely not unbearable.
My GI postponed by second Recimade treatment, which was supposed to be today, because of the rash. Now I need to decide whether I want to try another treatment next week, if the rash is gone, or give up on Remicade. I am really not sure what to do. Having two weeks of an unsightly and uncomfortable rash after every treatment does not sound appealing, but I am desperate to avoid steroids in the future and to get off the prednisone I am taking now. My true concern is the possibility of a more severe reaction to the second and subsequent infusions. My doctor is leaving the ball in my court, but I really don't know what to choose. FYI--I am nearly in remission with my ulcerative colitis, but this was due to the prednisone, not the Remicade. It is hard to opt for a medicine that might make me miserable when I feel okay colitis wise. However, I also want to think of my long-term future. Repeated courses of prednisone are just not an option for me, so I was really hoping Remicade would work for me.
Any advice?
Thanks,
b