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What is the longest someone has been on Remicade?

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Ulcerative Colitis
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Posted 3/25/2008 3:44 PM (GMT 0)
The reason I am asking is I am considering starting it but I am only 26. I thought I read somewhere that they don't have any long term studies that have been done on it. My doctor is of the mindset that if you have any symptoms at all then we need to try something else. I feel like I can manage with the symptoms right now okay for the most part. I wonder if I should try to wait until I am older to try something more hardcore....
Posted 3/25/2008 3:50 PM (GMT 0)
Well, I've been on it for almost three years (May.) I was on it before it was approved by the FDA for UC, but it was approved for Crohns and RArthritis, so I know some of the folks have been on it for long periods of time. You might want to poke around on the Crohns forum and see if anyone has been on it a longer period of time. I can tell you it's been heaven sent for me.

Posted 3/25/2008 5:35 PM (GMT 0)

Remicade worked wonders for me, however I stopped taking it becasue I didn't want to be on it permanently.

I took 3 infusions of Remicade and then stopped. I went without UC drugs for about a year and then got another flare up. I then took 6MP pills for about a week and the flare up went away. Then I went about a year and a half until another flare up. I again took 6MP pills for about a week and the flare up went away. I again went drug free and it has been a year and a half since any flare ups.

My method is against my doctor's recommendation, but I refuse to be on Remicade full time.

I just want people to know it may be possible to use Remicade temporarily even though doctors may not recommend this.

FYI - Prednisone and other anti-inflammatory drugs did nothing for me.

Posted 3/25/2008 6:03 PM (GMT 0)
I had my second infusion two weeks ago but I sat next to a woman with chrons that started remicade as a test subject more than 10 years ago and is still on it with no side effects.

I started becuase i am steroid dependent and imuran didn't work for me (over six months on with no improvement).

I've been in a flare for two years and am willing to go on remicade for the rest of my life if it works and the insurance holds out. My husband and I are planning on getting pregnant even on remicade. It's been around for over ten years and I feel comfortable with that. It is a class B drug which is safer than a class D like imuran.

It's a hard decision to make but there is lots of info out there. Has your GI given you other options?
Posted 3/25/2008 7:16 PM (GMT 0)
I cannot wait to get on remicade, it has been a 3 month long fiaso, first I had to get a PHP test from my general doctor which took 2 weeks to get an appoitment and now my GI wants to do a colonoscopy before I start remicade to he can monitor the imrovement that took another month to schedule and now he wants to get me cycle off everything else I'm taking I mean god just get on with it already.
Posted 3/25/2008 10:08 PM (GMT 0)
He wants me to try Entorcort one more time but last time it only worked for about 20 days or so. Then he wants me on Remicade because he said the other options will not work very fast. My main problem is I can't always tell if my symptoms are from IBD or IBS. My doctor says that if it seems like my symptoms are after I eat something in particular then it is from IBS - but sometimes that happens and I still have blood which isn't supposed to be part of IBS from what I understand. Also when I am on steroids I have absolutely no symptoms at all no matter what I eat. Do you know if steroids would get rid of IBS also? Maybe I start a thread on that....
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