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Remicade ?'s

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Ulcerative Colitis
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Posted 4/16/2008 3:14 PM (GMT 0)
My Dr. wants to start me on Remicade since I am not responding to Prednisone anymore.  The medication guide I read says that some adults have developed a rare form of cancer from Remicade, anyone have any info on this?  What should I expect from this medicine?  Do you feel any change after first infusion?  Are there any bad side effects? Any information would be helpful. Thanks.
Posted 4/16/2008 3:40 PM (GMT 0)
I know there are a lot of people on here that are on Remicade but for me, it's not a drug I want to take. My GI from the Cleveland Clinic put it to me like this...this disease won't kill you so why would you want to take a drug that can kill you?" I know the cancer risk with Remicade is rare but I'm way too scared to risk it.

Have you tried immunosuppressants, what about steroid enemas? All traditional UC meds make me worse (like Asacol, Colozal, Rowasa, etc). The doctors have a hard time believing that they make me worse (because they don't like to listen!). If you aren't comfortable with Remicade, there are other options. If your doctor keeps bringing it up you might need to switch doctors.

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Post Edited By Moderator (tjf) : 4/16/2008 12:43:37 PM (GMT-6)

Posted 4/16/2008 3:41 PM (GMT 0)
After reading the possible side effects of remicade and other postings, I cancelled the first appointment that my doctor set up for me about 3 years ago. Since then I got into a flare from "hell" and could not get back into remission. After about 9 months, I resigned myself to surgery and had it scheduled. But I got so sick that I decided to try remicade. I have been on remicade for over a year now and I am about as normal as I get. It took 3 treatments for me to receive full remission, but I noticed a big improvement after the 2nd treatment which was administered 3 weeks after my 1st treatment. I'm still scared of all of the possible side effects, but I guess I'll be on it until something better comes along.
Posted 4/16/2008 4:08 PM (GMT 0)
there is nothing that is totally 'safe', 5ASA's such as sulfasalazine and asacol gave me Kidney Disease, which I am battling and for the Kidney disease they gave me prednisone, which is making me pre-diabetic and of course a whole other set of issues to worry about. Even surgery has it's own complications.

my suggesstion, research, research, research and then make the best decision for you.

I hate to say this coz I don't want to jinx myself but after I have kids if I ever get real sick again and can't get better I think I might just say, "see ya" to my colon and, "hello j-pouch". But I have not researched surgery yet, so I don't know exactly what I would do.
Posted 4/16/2008 9:08 PM (GMT 0)
Recent review has shown that patients who developed those rare cancers were those who were on Remicade and immunosuppressants (Imuran, 6-MP) together. My doc has taken his Remicade patients off the immunosuppressants. Basically, he doesn't start Remi until the immunosuppressants have failed, so any minimal benefit from them isn't going to be missed much.
Posted 4/16/2008 9:14 PM (GMT 0)
also, the overwhelming majority those patients who developed lymphoma were in the male pediatric population. I dunno... everythings got it's risks.

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