HealingWell
Search Close Search
☰

Remicade and those who have used it...

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/27/2011 8:47 PM (GMT 0)
Has anyone done a limited number of Remicade treatments ( like 3 ) for Ulcerative Colitis then stopped? If so, did you stay in Remission? I don't like the idea of being on in indefinately.......

Thanks all...
Posted 12/27/2011 9:15 PM (GMT 0)
In my case, I am continuing treatment because even though I am feeling good, about 4 weeks after treatment I can feel the symptoms coming back. We have some people who stop Remicade after being on it for so long, once they reach a good solid remission and they continue their remission with 5-ASA's alone.
Posted 12/27/2011 9:25 PM (GMT 0)
Remicade is intended to be used long-term. If you go off of it, then you are likely to develop antibodies and will not be able to take it again at all.

I wouldn't recommend going off of it if it is working for you unless you have been doing well for a year or so. And, even then I'm not sure if I would go off of it at all.

You should talk to your GI, but I imagine he'll tell you the same.
Posted 12/27/2011 9:30 PM (GMT 0)
Once you are on Remicade and go off of it, it's very difficult to go back on it again without developing an allergic reaction. You probably would have to stay on it for a while to make sure you are in remission but if you go off of it then there is no guarantee that your UC won't return. It's really one of those drugs where you either do it and stay on it or don't bother with it. I was on it for a year but never attained remission at all.
Posted 12/27/2011 10:23 PM (GMT 0)
     Unfortunately, Remicade failed after my 3rd infusion sad .  I then gave Humira a shot for three months, but no change in my condition.  So, after 6MP, Remicade and Humira....still sick and prednisone dependent, I had surgery on June 28, 2010.   No more ulcerative proctitis yeah .
Posted 12/27/2011 11:19 PM (GMT 0)
Spudrt. I have. I had 3 treatments and that was all my doctor ordered for me. I was in a severe flare a few years ago (2009) and was on 40 mg of prednisone for close to 2 months and I just kept getting worse and worse with a lot of blood loss. The remicade had an immediate effect in calming my symptoms and putting me into remission so I could taper off the prednisone.

My after affects were that I had severe joint pain about 9 weeks after my last dose of remicade. I could barely walk, pick up anything, and had a fever. It took months to get over this and I even visited a rheumatologist and had many tests done but no definitive diagnosis. Anyway, that is probably a unique reaction and was probably also caused by the prednisone.

I did re-flare within 6 months but it was not as severe and I was able to get it under control with a course of prednisone and introducing mesalamine enemas as I tapered off. Though I have had some flaring since then I have never had one as severe and have not had to consider remicade again, or prednisone.

My GI is in his 60's and been practicing a long time. His approach may be uncommon but I don't believe it is unique. My other option was to be admitted to the hospital and put on IV steroids. I hate hospitals and avoid them. Plus I was working and could not take that time off.
Posted 12/27/2011 11:37 PM (GMT 0)
Yes it is possible to come off it and stay in remission. I know of two people who did that and aren't on any maintenance drugs. I would however go slowly. Good luck.
Posted 12/28/2011 1:49 AM (GMT 0)
i plan on getting off of remicade next year. i feel fine. i want to stop my 6mp first though and see how i feel for a few months. i'd hate to get off both at the same time and then have my symptoms come back. i'm thinking mid february is when i'll be done with 6mp and then next summer i can get off remicade.
Posted 1/9/2012 12:58 AM (GMT 0)
Thank you everyone for all your input.....Right now I think I am turning the corner. I am currently doing a lot of natural therapy and it seems to be helping in conjunction with mesalamine suspension. Seems like it is always conventional meds that put me in a flare-up..... anti-biotics, nsaids, singulair........I have been on singulair for almost 5 years. about the time I have been dealing with the worse of my flare-ups. came off singular in the spring for a med holiday and had the best 7 months being symptom free. went back on singulair in the fall and 3 weeks later started my most recent flare-up. if was also post colonoscopy/biopsies........hmmmmm. Regardless, I'm staying off any conventional meds unless I have no choice.

Best of luck all...

✚ New Topic ✚ Reply