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Anyone stopped Remicade when in remission?

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Crohn's Disease
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Posted 3/20/2008 4:02 AM (GMT 0)
Hi- I am looking for some advice... I have been getting Remicade since 11/06 and have pretty much been in remission ever since. I have not actually had an infusion since November of 07' but am supposed to get my next infusion on March 27th. I am wondering (since I haven't had it since November anyways) what would happen if I did not get another infusion?? I have recently been diagnosed w/ Rheumatoid Arthritis and found that I had developed antibodies to the mouse protein that is in the Remicade. That is why I haven't received another infusion. My Rheumatologist wanted me to be on Methotrexate and prednisone for about a month prior to getting another Remicade infusion. I have not been having any problems w/ my Crohn's since I haven't had the infusion like I was originally supposed to a month ago. I guess that could also be due to the Prednisone and/or Methotrexate also. I'd rather not be on meds if I don't have to be but don't want to go into another flare either! My Rheumatologist wants me to be on the Remicade for the RA and for the Crohn's but I was thinking that the antibodies to the Remicade caused the arthritis possibly confused Has this type of thing happened to anyone else?? or has anyone stopped the Remicade?? and if so what was the outcome?? Thanks, AKG
Posted 3/20/2008 1:17 PM (GMT 0)
I had to stop it a year ago because they chged insurance contracts and it was going to cost me more than I could afford...when I went off I was feeling great - and have been feeling really good all along ; however I had my 2 yr colonoscopy a week ago and he found active crohns colitis and 2 fistuals - after the colonoscopy I felt sicker than I had in 2 years...panicked - but it has passed 5 days later and I feel as good as I did before ! ( go figure !!! : 0 )

However, because it is active and the fistuals he is going to put me back on the cade or humira - ( most likely the cade since now my ins will pay again! )
But I feel good ...that is the hard part for me !

So...to answer your question : ) ... yep,proberbly the prednisone is really helping you right now...but, the cade really does keep things at bay - hope you are able to make the best decision for you - just be careful !

Like you I dont want to be on any drugs because of some of their effects I sometimes feel worse off....yet, I dont want to end up in the hospital again with things worse ...so, I have to comply : )

Hope you get your answers and get well !
Posted 3/20/2008 3:01 PM (GMT 0)

I definitely know what you mean about not wanting to be on more meds than you have to be. I was on Remicade for about 9 months and it made a world of difference in how I felt, but I wasn't in remission. My GI wanted my colonoscopy to be completely disease-free and it wasn't... but I felt fine, no symptoms at all! I stopped taking the Remicade last October (against GIs advice) because I was having lots of side effects (acne, weight gain, achy knees, etc) and since then I haven't had a flare yet. I haven't had a scope since then so who knows, I may or may not be in remission... I still feel great though, in fact my bloodwork still continues to improve. I'm on pentasa for maintenance but that's it.

If you have antibodies to the Remicade, I wouldn't think that you should take it anymore, because you're risking a reaction... has your doc said anything about switching to Humira? Maybe you could try going without the Remicade for awhile and then start Humira if you start to flare again. Good luck!

Posted 3/20/2008 5:27 PM (GMT 0)
Remicade put me into remission as far as the Crohn's is concerned, but I still got both stomach and a lot of joint pain right before my next infusion.  I also developed anti-bodies and had allergic reactions, which ended up causing me to stop getting it.  Luckily, a few months after my last infusion, I got into a clinical trial for Cimzia.  Based on their Crohn's Relative Activity Index, or whatever it is they use to measure Crohn's severity, I was still clinically in remission when I got into the trial (so, a few months after my last Remicade treatment, I was still in remission); however, I was having more stomach pain again and lots of arthritis pain.  If you are having reactions to the Remicade, I would personally stop getting them.  Even at the hospital with 12 hour infusions and lots of premedication, I still had a small reaction and decided that it was not worth the chance I was taking.  If you want to try going without anything, you may be fine for a while.  If you start to have problems again then try something else, such as Humira. 
Posted 3/20/2008 10:52 PM (GMT 0)
I was on Remicade for most of 2003 and had my last infusion in December that year. I was in remission with just Imuran at that point. I was able to maintain remission on Imuran until after having my daughter in May 2005. I had reactions to Remicade too, which I was able to get past with premedication and a very slow drip (my infusions took 5+ hours) but when I needed more than the Imuran, my doctor told me no more Remicade because it had been so long since I had had it plus I had had reactions and put me on Humira. I've had the same success with Humira and no longer take Imuran.
Posted 3/21/2008 1:28 AM (GMT 0)
i stopped in december 2006. i did the makers diet and that got me feeling fantastic so i skipped my next infusion (was getting every 2 months at the time). still felt good by the time my next one came around and i kept getting better so i just stopped taking it. i believe i had started to develop antibodies to it cos it wasnt as effective as it used to be so the next step for me was humira. havent taken that one yet. diet seems to be working.
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