Experiences with Remicaide

The side effects of Imuran are really bad also. A family member we placed on Imuran for her Crohn's disease (age 10). Undocumented side effects: Stroke and RSD

Although these side effects have been reported to the drug company multiple times they still are not on the list of side effects. Unfortunetly the Imuran caused both the stroke and RSD she was in a wheelchair for almost a year and 2 years later is just now getting back to normal.

I HAVE CROHN'S DISEASE FOR 7 YEARS NOW AND REMICADE IS THE ONLY THING THAT WORKS FOR ME PRESENTLY. ANY BODY THAT HAS EXPERIENCES WITH REMCIADE I WOULD LOVE TO HEAR FROM YOU. SO E-MAIL ME AT [email protected]

Our clinic administers Remicaide to patients with Crohns as well as to those with Rhematoid arthritis. We start the infusion at 10cc/hr and titrate every 15 minutes to a maximum of 250cc/hr, monitoring VS q15 minutes. I haven't seen any adverse reactions during the infusions using this protocol. The returning patients all state improvement in symptoms. We've only been giving it for a couple of years, so I can't speak for the long term effects. It does seem to be a worthwhile treatment for symptom control.

I have had some patients that developed good remission with remacade, and I have had a few that it made no difference in their Crohn's - I haven't t had any yet that have stopped treatment due to side effects. Most of them felt that the disease full blown would be worse than the side effects.

As an ulcerative colitis patient, the full blown attacks make me almost wish for an ostomy - I can only imagine how it is for crohn's resistant to treatments. Your mother may feel like she has nothing to lose and everything to gain w/remicade.

Also, many of the new cancer/autoimmune disease treatments fall into the biotherapy category - and therefore, tend toward being "a bag/shot of flu" - flu-like side effects being a problem. Unfortunately, I think that many of the upcoming treatments will continue to have the same problems associated with them. (examples:mylotarg, retuxan, campath, etc.)

My husband has Crohn's disease. He has had excellent results with 6MP (mercaptopurine or purinethol). He has had remissions up to 3 years in length on this. He uses prednisone for flare-ups only. This last flare-up, they tried to add pentasa to his regimine but it caused his liver enzymes to go whacko. He has discussed remicaide, but because of the time requirements and all, and the commitment it requires, he is hesitant to do it. There also are a number of clinical trials underway at present, aimed at improving quality of life for Crohn's patients. You may want to look into those.

I'm not an RN, yet.... but I do have Crohn's. I have had six Remicade infusions over the past two years and have never had any severe reactions. The only thing I've noticed is that approximately 12-24 hrs after the infusion, I experience flu-like symptoms: moderate body aches, low grade fever and just really feel tired. This usually lasts 4 or 5 days, then I'm fine.

I have been on Imuran for five years and have had no problems. I would be happy to answer any questions anyone has.