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Remicade Intolerance

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Ulcerative Colitis
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Posted 9/9/2014 8:36 PM (GMT 0)
Hi,
For those of you that have tried Remicade and had to come off of it, what was the reason you had to change drugs, and were you on an immunomodulator like 6mp while on remicade? Thanks...just trying to look for potential common side effects.
Posted 9/9/2014 8:56 PM (GMT 0)
I'm not sure what you are trying to get here bearflag.

I've never heard of an intolerance to remicade, to me that means an adverse allergic reaction.

People stop taking remicade because it either did not initially work for them or due to it no longer working after a while (e.g., due antibody buildup, disease progression, etc.). Usually people are on some immunomodular at the same time (e.g., 6mp, imuran, aza). Some move on to Simponi or Humira, or envyio. Others surgery.
Posted 9/9/2014 9:29 PM (GMT 0)
You are right...just trying to feel out the failure rates...I just need to be positive and hope I do not develop antibodies. Just worried and tired of feeling poorly. Thanks
Posted 9/9/2014 9:49 PM (GMT 0)
Eventually Remicade stops working for everyone. Whether that takes a few months, 2 years, or 10+ years is hard to tell, but eventually your body will find a way to compensate.
Posted 9/9/2014 9:52 PM (GMT 0)
I developed reactions to remicade during every infusion. I decided to get off of remicade after talking to my GI about and to just stay on imuran, I did just fine being on just the imuran.
Posted 9/11/2014 3:17 AM (GMT 0)
I have pains that I attribute to Remicade. They are bad feelings of body aches and a poisoned feeling. They started 6 months after beginning the drug. I was on Imuran when they started, but only briefly. I began Imuran a few months before the pains, and quit it a month after they began because I thought it was causing them.

I'm actively looking at my options to stop Remicade.
Posted 9/11/2014 3:51 AM (GMT 0)
Marauder, that's sort of a broad statement. What makes you say that? Seeing since Remicade has only been officially approved for UC since 2011.


Bearflag, I have been on Remicade 2 1/2 years (pretty much since it's been officially approved for UC)...reached remission after being on it for 6 months or so. I haven't had a problem other than after the 3rd infusion my hands swelled up horribly. But I wasn't premedicated then. After that I now get Benedryl and Solumedrol....no issue since. Why do feel this will fail you?
Posted 9/11/2014 2:14 PM (GMT 0)
After taking Remicade for 2 1/2 years I had an allergic reaction to the meds. Within hours of my last infusion, I got hives! Big fat itchy hives all over my lower torso! My doctor will not prescribe it again as she is afraid I will have a more serious reaction.

So I've had to switch to 6mp and Uceris.

I miss the Remicade and hate the 6mp!

Teresa
Posted 9/12/2014 2:38 PM (GMT 0)
I took Remicade for about 9 months. Put me into solid remission. After my third infusion I started noticing that I was having difficulty catching my breath for a period of about a week. Oddly enough this would onset about a week after the infusion and it wasn't an immediate reaction. It got worse and worse with each successive infusion until my very last infusion. At that point it hit me so hard I couldn't even stand upright in the shower and I missed a couple of days work. No oxygenation = weakness. Ran a bunch of tests to rule other things out and the docs concluded it was "serum sickness", whatever that is... Pretty unlikely you will react like I did though.
Posted 9/12/2014 9:55 PM (GMT 0)
First infusion completed this AM. No side effects at all so far. premed with Tylenol and Benadryl. Sleepy from Benadryl. So far so good/
Posted 9/15/2014 5:16 AM (GMT 0)
Remicade worked great for me for five months. Then I developed severe joint pains & neuropathy, a rare set of adverse reactions.
I hope it works for you. Enjoy it while it lasts!
Posted 9/15/2014 6:20 AM (GMT 0)
I wish you the best of luck on it, I hope it works for you. Many people seem to have success. It does not seem to be doing a thing for me, just getting worse.
Posted 9/15/2014 11:20 AM (GMT 0)
Remicade has been working well for me over the past 2 years. Having a good amount of joint pain where scar tissue is present, along with a number of other side effects.
Interested in pursuing other options, going to discuss with GI at next appointment.
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