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Hello everyone -
I'm new to the group. I'm 24 and was diagnosed with UC in the fall of 2004. I've been battling with it ever since. I've been on and off (mostly on) steroids for the last two years, I live on asacol, and also take 6-MP. My doctor was beginning to talk about surgery, but it was an option I wasn't even willing to consider. My only other option was to try Remicade. This drug has saved my life. I debated on whether I would try it giving the risks of lymphoma and other illnesses, but if you do the research, as an American your risk increases by something like .1% when taking the drug. For me the low risk seemed worth the potential benefits. I felt like I had the flu after the first infusion and thought the drug wouldn't work for me. It was only after the 2nd infusion that I really noticed a difference. I just had my 3rd infusion and plan to continue with the maintenance every 8 weeks. I have a co-worker who has Crohns. She received the 3 initial infusions, which put her into remission and she hasn't had any problems since. That was about 3 years ago at which point she was in and out of the hospital. Overall I highly recommend the treatment. It's a bit of an inconvenience to go sit for 3 hours to get the infusion, but I think it's well worth it. Len - Best of luck to your son!
- Kristen
From: Elisa <elisa_408@...>
Reply-To: crohns_n_colitis@yahoogroups.com
To: crohns_n_colitis@yahoogroups.com
Subject: Re: [crohns_n_colitis] Re: Would appreciate advice on Remicaid
Date: Thu, 1 Feb 2007 11:40:27 -0800 (PST)
soklueles2002 <soklueles2002@
--- In crohns_n_colitis@yahoogroups. , "Len B" <thelenshow@com ...> wrote:
>
> My 13 year old son has not responded well to traditional treatments
> for his UC...azacol, pentassa, etc. His colon remains severely
> inflamed.
>
> His Gastroenterolgoist has proposed the use of Remicaid through bi-
> weekly IV drips for six weeks followed by monthly treatments. When
> I read Remicaid descriptions on the internet, it said that treatment
> with Remicaid may increase the risk of lymphoma and other cancers.
> This stopped be dead in my tracks as my father passed away from
> Lymphoma.
>
> The other option is a J-Pouch which I guess I view as a severe
> solution in its own right.
>
> My question is whether anyone has been treated with Remicaid and have
> they heard anything different than what I have heard? Is the
> lymphoma connection something that they have to put in disclaimers to
> cover themselves aginst lawsuits? What is the real risk?
>
> Alternatively, what are the risks with the J-Pouch procedure.
>
> Thank you in advance for any words of wisdaom you may offer.
>
>
> Len B
>
hi len, im sorry about your son and being diagnosed with crohns disease.
first of all, have you talked to your doctor about your family medical
history? I do know that people have tried to sue the makers of
remicade in the past because it is known to cause blood diseases. I,
and a few friends of mine have crohns disease and remicade is a
blessing for us.
When i had my second round of remicade, i could feel a huge difference
in my body. I didnt hurt, and i had a new lease on life
I would definately talk to my doctor about the risks about crohns
disease and remicade and the side effects and find out what the
percentage of people is who get the blood disorders etc from it
I have one friend with the j pouch. She has no colon. I do know that
she has had some problems with the pouch crimping up and she gets
consitpated.
good luck with whatever you choose.
(647-287-3748)
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