Should I stop taking remicade?

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Regular Member

Date Joined Apr 2007
Total Posts : 66
   Posted 10/10/2008 9:57 AM (GMT -6)   
Semi long story.
Diagnosed with Ulcerative Pancolitis 2/2006. I did not take the meds and it got worse. Two one week hospital stays and a couple of transfusions and i got it under control. Have tried all different type of meds. I actually got Mercaptapurine toxicity.

I did switch GI docs in the first year and my new GI docs had me on remicade every 8 weeks and I take 1.2Grms of Lialda a day.

For the first year when i was about 3-4 days out from the remicade I would get little mini flares. going from 2-3 to 5-6 BMs a day and would get the typical pain. Somewhere around mid 2007 I went to a 9 week interval. Towards the end of 2007 i no longer started to get sick before i got my remicade and for the past year I feel no different before or after the infusion. There is ab****ly zero change in my body leading up to or following my remicade infusion.

For the past 8 months things are just as they were before i ever got full blown sick. 1-2 BMs a day. 2-3 if i eat veggies like corn you know? LOL
I can eat Jalepeno poppers,hot wings salsa etc etc. Just no rough veggies. I excercise 3-4 days a week. Have dropped from 220 pounds to 185 pounds by riding my bike to work. I think the fitness had a huge issue with making me feel better.

One of the biggest things that bothers me about remicade is it made the top ten FDA list for dangerous drugs cause of the NHL risk in kids. I just do not believe that a drug that can cause NHL in children is saf elong term for adults. Plus so i will not have an allergic reaction i have to drink 1/2 bottle of childrens bendryl before my infusions. I have had three reactions to remicade. Itchy red skin etc etc.

The immune surpressant is a huge issue with me. I am a health care worker and am around sick people all day long every day.

I ramble, but to truly get some honest opinions I only feel comfortable asking people who also have this disease. Cause only you truly know.
Ulcerative Pancolitis diagnosed March 2007.
Quit smoking Dec 2006.

Veteran Member

Date Joined Feb 2005
Total Posts : 6448
   Posted 10/10/2008 10:39 AM (GMT -6)   
Well, I've been on Remi for quite some time now. I haven't had any reactions and I'm feeling good, so for me taking the Remicade and feeling well is worth it. I'm not sure of what tomorrow will bring so feeling good today is all I can hope for. Before the Remi I was so sick I couldn't I guess you'll just have to weigh the facts. Try writing down the pro's and con's and maybe that will help with your decision.

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
Co-Moderator for the UC Forum

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