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

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Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 6/13/2008 9:09 PM (GMT -6)   
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?

Remicade and 6MP

Post Edited (petittarte) : 6/13/2008 8:15:05 PM (GMT-6)

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 6/13/2008 10:16 PM (GMT -6)   
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.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 6/14/2008 12:06 AM (GMT -6)   
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.

Regular Member

Date Joined Jan 2006
Total Posts : 355
   Posted 6/14/2008 1:33 AM (GMT -6)   
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. 

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 6/14/2008 6:24 AM (GMT -6)   
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
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 40mg

New Member

Date Joined Jun 2008
Total Posts : 7
   Posted 6/14/2008 6:26 AM (GMT -6)   
 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.
First major symptoms in '96, horseshoe fistula's and severe abdominal pain with BD shortly after. Diagnosed with Crohn's in 2001. Double fistulectomy in '02. Too many cut, drain and packs to mention.
Began Remecade in late '02, 5 vials every 4 weeks. 500mg Cipro twice daily, and 250mg Flagyl 3 times daily.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 6/14/2008 11:18 AM (GMT -6)   
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!

Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 6/14/2008 6:15 PM (GMT -6)   
Thanks Jlove. I get my next dose on Tuesday so I'll see if that makes any difference.

Remicade and 6MP

Crohn's 4 ever
Regular Member

Date Joined May 2008
Total Posts : 207
   Posted 6/14/2008 7:02 PM (GMT -6)   
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.

Regular Member

Date Joined Feb 2008
Total Posts : 91
   Posted 6/14/2008 9:09 PM (GMT -6)   
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.

CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Back on Prednisone - I hate it
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium

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