is this a flare? anyonje on remicade, please advise- kind of desperate

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Regular Member

Date Joined Oct 2007
Total Posts : 241
   Posted 11/27/2007 7:30 PM (GMT -6)   
I have been on remicade for 3 infusions, and it seemed like it was starting to work.  i was down to 30 mg day of prednisone. i was pain free for the first time in almost a year. i weaned off of all narcotics, which was a formidable task. i then developed c dificile diarrhea and had to start flagyl. Still no pain, but when i weaned down to 20 of pred, my pain has returned with a vengeance. no fever, just the burning hell that i alway had. does this mean that i am failing the remicade? i am so weary of this pain. it is relentless. i am a health care provider and narcotics are not something that i can use on a daily basis and feel safe practicing. has anyone had this wax and wane on remicade and stilll had it ultimately work for them?

Regular Member

Date Joined Dec 2003
Total Posts : 494
   Posted 11/28/2007 9:32 PM (GMT -6)   
ive been on remicade for 2 1/2 years and was fince until about 6 months ago, when i flared up. been on prednisone since then and am now down to 10 mgs now. im thinkin its working so we shall see. oh, and my doc doubled the dose of the remicade. but i think you can be on it and then have a flare and be ok.  plus youre still early in your infusions, it took me about 6 infusions to really get to feeling better.
hope you start feeling well soon,
Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Probable MS
Im 26 years old, and am currently only taking remicade, protonix and evil prednisone for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.
"We are all worms but I do believe i am a Gloworm"
^always makes me smile^

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 11/28/2007 10:57 PM (GMT -6)   
It can take a few months to see a diff - I wouldn't give up yet. Your GI could up your dosage of REmicade, or make you take it more often. I went anywhere from 4-12 weeks apart, depending upon how I was doing.

Your GI may need to up the prednisone for now and try to taper it off in a month or two.

Regular Member

Date Joined Oct 2007
Total Posts : 241
   Posted 11/30/2007 9:54 AM (GMT -6)   
thanks- i have a call in to my GI doc now. i fought so hard to get remicade, and i am praying that it works!

Regular Member

Date Joined Nov 2007
Total Posts : 139
   Posted 11/30/2007 9:06 PM (GMT -6)   
I have been on Remicaid for over 3+ years on a 7-8 week between infusions, I am free of prednisone since I started, I now have changed to 5 weeks between infusions as I think I am becoming tolerant to the remicaid. I too wounder if I am better or worse, I plan to ride this Remiciad out untill it don't work as I do not know the alternative. I have in the past and currently live with chronic pain, in a pain management program. just taking it day by day but I am free of hospital stays almost 2 years now
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