July 25, 2006 5:09 PM   Subscribe

Remicade? I have a child whose Crohn's disease has proved refractory to most standard medications (except prednisone, but that's not a viable long term treatment).

It seems that Remicade is the next step. I've read extensively about epidemiological studies about this medication, but I'm looking for anecdotal accounts of individuals' experiences with it. Any MeFites able to help? My email is in my profile if you would prefer to contact me that way
posted by Neiltupper to Health & Fitness (6 answers total)
A good friend of mine has ulcerative colitis, and received Remicade treatments for a couple years. She traveled to Asheville, NC for treatments and was in a study for quite some time. Remicade worked very well at first, but she eventually had to have her colon removed. Her doctor told her he could spray paint her large intestine with Remicade every day, but it was going to help any longer. She is a few months post-op and has a J-pouch that was done laproscopically. She is pain free, healthy, and finally free from ulcerative colitis.

I wish you and your child all the best.
posted by LoriFLA at 5:22 PM on July 25, 2006

but it wasn't going to help any longer
posted by LoriFLA at 5:22 PM on July 25, 2006

There's some evidence that deliberate infection with some types of worms can help. It's pretty out there, medically, but the argument seemed sound to me. (note! I am NOT a doctor.)

Basically, the human immune system has two branches; one that is meant to fight viruses/bacteria, and one that's meant to fight worms and parasites. Humanity has never before been so parasite-free. We co-evolved with worms, and it appears our immune systems are, in many cases, looking for something to do, so they attack the wrong things, like pollens (causing hayfever) and the body itself (causing multiple different immune disorders, including, apparently, Crohn's disease.)

In the presence of worms, which secrete anti-immune-system chemicals to try to protect themselves, the body's immune system will apparently often recalibrate itself and start behaving properly, attacking the worms instead of the incorrect target.

I can't speak about Remicade, but if he gets to the point of needing his colon removed, you might as well try worms first, since it can't be any worse. Personally, I think I'd try them before Remicade.... we evolved with worms. There are numerous types that are only harmful when you have a lot of them, and they're easy to kill if they're not helping. We didn't evolve with Remicade, and if he's that young, I can't imagine that a lifetime of that stuff is going to be very good for him.

There ARE doctors experimenting with worms as treatment for this kind of problem, so you CAN do this under medical supervision.
posted by Malor at 6:48 PM on July 25, 2006

WebMD on the worms thing, because I was curoius and I suppose someone else may be, as well.
posted by Medieval Maven at 7:24 PM on July 25, 2006

I have a friend with rheumatoid arthiritis who used remicade with outstanding results for a couple years. unfortunately, said friend ended up with drug induced lupus and had to quit remicade treatments. i don't know if the remicade was the sole cause or not.

remicade increased the quality of life dramatically while it worked.
posted by domino at 6:22 AM on July 26, 2006

My sister had ulcerative colitis in high school and college and eventually had the j-pouch surgery. Email me through my profile if you'd like to connect with her. She loves to talk with people who are going through this.
posted by orangemiles at 10:21 AM on July 27, 2006

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