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A question for those of you who have failed on Remicade...

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Crohn's Disease
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Posted 6/14/2008 2:09 AM (GMT 0)
Was the loss of Remicades effectiveness gradual requiring with you requiring more frequent infusions to control your symptons or was it sudden? I've been on Remicade for about 1.5 years along with 6mp but my doc suspects that it is no longer working for me. I had a sudden attack of vomiting, d and bad pain about a week after my last infusion which I originally chalked up to a bug or something I ate, but its been 7 weeks and things are just getting worse. I'm in constant pain, have really bad gas and bloating, more frequent bouts of vomiting, d about 1 per week and 5 -10 formed bms per day. My platlet count and crp are also on the rise. I had an enterography a couple of weeks ago which said that I have very healthy intestines and am going for a colonoscopy on Monday. We don't really expect the scope to show anything since my disease has only been seen via capsule study but need to do it to get insurance approval of a new capsule study. I just didn't think Remicade failure would be so sudden so I'm still hopeful that it is a bug causing the problem. So my fellow Crohnies tell me your experience. Is this false hope that I'm holding on to?
Posted 6/14/2008 3:16 AM (GMT 0)
For me it was gradual. It never lasted 8 weeks. Soon I was at 6. Then I needed infusions every 4 weeks. Doubling the dose did not help. Then I quit for 6 months to try Humira which did not work either. When I tried to go back to Remicade, I had a reaction and it just did not work at all. May as well have been saline in that bag.
Posted 6/14/2008 5:06 AM (GMT 0)
Remicade was a gradual needing to increase frequency, then dose etc. I was on for four years and now on Humira. Humira is much better for me.
Posted 6/14/2008 6:33 AM (GMT 0)
I remember how wonderful I thought I felt when I first started Remicade.  I think I was so very, very sick that any improvement, however small seemed huge.  It basically hardly did much after a while and then I developed reactions to it and had to stop after about a year and a half.  I am now on Humira and the difference is huge!  I am pretty much symptom free for two years now.  When I compare Remicade to Humira, for me there is no contest.  Humira wins hands down in every aspect.  Remicade just didn't do much at all for me. 
Posted 6/14/2008 11:24 AM (GMT 0)
Remicade worked for me for a few months. But when I had my 3rd infussion I had a reaction to it and ended up in the hospital for a few days.
So I wasn't on it very long. We treated with 6mp and that worked well for me for a few years but it makes my joints stiff.
My flares since then have been able to control with Cipro. Now I'm in a bad flare and on pred. for now. My GI doctor has
mentioned Humira but I haven't started it yet. I think he is trying to hold off and a little afraid to have me try it since I didn't do well on
Remicade.
Posted 6/14/2008 11:26 AM (GMT 0)
 It's seems to be hit and miss with the infusions. Sometimes I'll get that " chemical" feeling throughout my body after an infusion, and I can tell I've gotten a great dose, and other times, it seems like it was only saline. Many of the other remecaders at my infusion centre have said the same thing. Could be you just got one of the "lemmon" doses of the magic mouse juice.
Posted 6/14/2008 4:18 PM (GMT 0)
It will be 4 years for me this Dec., and I have just upped my dose, and I go every 8 weeks. No wearing off really, it is still working great every time!
Posted 6/14/2008 11:15 PM (GMT 0)
Thanks Jlove. I get my next dose on Tuesday so I'll see if that makes any difference.
Posted 6/15/2008 12:02 AM (GMT 0)
Hi there, yes, I was on Remicade and had severe lymphatic reaction in my arms and this was on my 3rd infusion.  I went to emerg, and they said it was a reaction to the drug.  Couldnt move my arms and was on percs for days, and then went into my jaw and that was mild, then to my foot which ballooned.  I would think after longer periods it would be ok, but this drug is not known long term.  I am on Humira and on the 12th week coming, doing about 90% better! Hope you find out what is going on. Good luck.
Posted 6/15/2008 2:09 AM (GMT 0)
I was on it from the point it came into Canada. I was in the testing of the drug. I took it for four years at every six weeks. I thought it was great and they thought that it worked well too. I came off it when they felt that I was doing so good and no sign of CD, AS or Uveitis for almost 2 1/2 years. I moved to Australia and everything was fine for six months. I returned to Canda to have brain hemorrage (anurysm) 2 1/2 years ago. I did't know till a few days ago that it is a >2% chance of this happening. Since dealing with doc's, upteen tests and medical procedures and surgeries I have found that I also have lymphoplasmacytic in my stomach and it is not caused by a H. Pylori infection. I do beleive that both of these are caused by Remicade. I can not try Humira due to the brain hemorrage. *sigh*

I do not feel that this a bad drug; just that it isn't a good drug for me. I am sure that it is a wonderful drug for others.

I hope that you do find out what is happening and that your health becomes better.

Shoshanna
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