longterm side effects of remicaid

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Regular Member

Date Joined Oct 2007
Total Posts : 75
   Posted 12/10/2007 8:56 AM (GMT -7)   
I have consulted with three gastros and two of them state that they are very conservative about using Remicaid as it has the theoretical side effect of malignant tumors. They usually only give it to older patients and they'd rather deal with the devil that they know (prednizone) than the devil that they don't (remicaid) as it has been on the market such a short amount of time and there are always medications that in hindsight..... However, the other doctor says get off prednizone right away and get on Remicaid. Nothing else works. Anyone else run into similar problems?

Regular Member

Date Joined Apr 2007
Total Posts : 345
   Posted 12/10/2007 1:31 PM (GMT -7)   
well that is crappy news sad pun intended)
32 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 

Regular Member

Date Joined Oct 2007
Total Posts : 75
   Posted 12/10/2007 3:19 PM (GMT -7)   
Don't get so concerned right away-see there are very different opinions. That's the confusing part. More conservative docs say-never will use until I know for sure whereas others say it is way better than prednisone and the risk of cancer is purely theoretical. It makes it confusing for me as to what decision to make!!!

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 12/10/2007 3:39 PM (GMT -7)   

I was really against the idea of Remicade at first.  The cancer risk was just too scary.  There's a ton of cancer in my family history.  But you just can't stay on the Pred forever.  There's a much higher risk of damaging bones, eyes, getting diabetes, and probably a host of other problems from the Pred than getting cancer from the Remicade.  And the longer you stay uncontrolled, the more damage you do to your body.  These are the reasons that I chose to try the Remicade.

I think it also depends on how "long term" you mean.  Remicade has been used in the US for Crohn's since at least 1999.  They've got a pretty good idea what it's doing to our bodies now.  What the effects will be in 20 years?  Maybe we don't know that yet.  But if it allows me to work and have a semi-normal life, and hopefully keeps me out of the operating room for the forseeable future, that's a risk that I'm willing to accept.  I had my first infusion less than a week ago, and I'm already seeing improvement.  I was on a slide back toward hospitalization, and the Pred was only slowing it down, not stopping it.  So for me, from my very limited experience with the med so far, it was the right decision.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 12/10/2007 3:51 PM (GMT -7)   
Hi I was told the cancer risk was around 2 or 3 % chance. I have not read any threads here of people getting cancer from the Rem. so would be interesting if someone did if they would tell us about it. lol gail

Regular Member

Date Joined Oct 2007
Total Posts : 75
   Posted 12/10/2007 4:07 PM (GMT -7)   
I don't think it would be that shortterm as it is listed as a longterm side effect and it has only been on the market since 1999-I would guess that 9 years wouldn't be considered longterm??? I'm thinking like 20 years from now is what the dtr means.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 12/10/2007 7:00 PM (GMT -7)   
I honestly haven't faced that. My GIs were always very excited about the new drugs on the market that would save their patients from the horrible side effects of steroids. I was on Remicade within a month of my DX and it gave me my life back. When that stopped working, I got approved to start on Humira before it was approved for Crohns.

I try to be cautious but when you're barely living, you have to make a decision for what is best now. So I try to not worry so much about the possible side effects and long term effects and keep focused on how much better my quality of life could be.

I would seek another opinion, personally, if you want to treat your disease more aggressively and move away from reliance on steroids. I've had 4 GIs since my dx and they were all very supportive of using the latest and greatest to treat my disease.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted Yesterday 7:09 AM (GMT -7)   
EmmyT,,do you drive? Think of all the danger in driving. Now think of what you miss by not driving. I'm not trying to make light of the fears we have, just maybe put them into perspective. Each day, life is a gamble. we make the best choices we can but still we dont know what will happen. I take remicade because I chose to live a little better, now, instead of perhaps, a longer more miserable life. But then , I am one of those ,OLD goats the doctors figure may not be here for much longer anyway.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3437
   Posted Yesterday 10:13 AM (GMT -7)   
Remicade put me into remission, & allowed me to postpone my scheduled total colectomy. I love it!!! I feel that I've got to live my life in the present- I can't worry about things that "may" happen down the road. Also- a top-notch GI told me that the lymphoma risk was found almost solely in male pediatric patients- don't know if that applies to you, but it sure doesn't to me. I really feel that pred is far worse than what they currently know about Remicade.

diagnosed with UC '02
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day

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