I have never been on Remicade but I've been told of Remicade, Humira & Embrel. My GI told me that if I ever took one of those drugs, I could NEVER get off of it. It would be a life-long commitment. I couldn't just take Remicade, feel better and then stop taking it. So I told him I'd have to feel like I was dying from my Crohn's before I went on any of those drugs.
So my question I guess on this subject is: have you guys been told going off Remicade (or one of those drugs) is OK to do? I know a girl who was "fired" by her doctor because she kept missing her Remicade infusions. She was doing MUCH better on the Remicade but she just got tired of going to the appointments and gave up. 3 months later she had a total colon removal and has a colostomy. She's only 24. It just makes me wonder if she'd kept on with the Remicade what would have happened and if that is why my GI told me those drugs were never to be started and then stopped?
Diagnosed in October, 2004 at age 32.
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills, Chromium Picolinate
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date