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Immunosuppression, how much is too much?

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Ulcerative Colitis
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Posted 4/27/2010 4:25 PM (GMT 0)
Hi all,
My daughter is one of those with fulminant colitis, and we have finally gotten her into a good solid remission. She is taking a lot of immunosupressives, however, more than I feel comfortable leaving her on long term. She does Remicade every 8 weeks now, and she also is taking Imuran 100mg. daily. Has anyone been on both and started to wean off one? Her GI says the Imuran would be the first to try and reduce, mainly b/c Remicade is hard to start back up on if you quit for awhile (and the insurance approval nightmares!). I'm worried about the risk for rare cancers, it is higher when taking the two together.

I think the Remicade helped her intestinal mucosa heal, but the supplements and the dietary changes we have made I think are what is keeping her in the remission, not the remicade.
Has anyone crossed the bridge of quitting TNF blockers because they felt they would do ok without and don't like the risks?
Posted 4/27/2010 5:18 PM (GMT 0)
Yes- I have.
I was on Humira for almost two years. I still had couple pretty bad flares that landed me on steroids as well. during a calm period I decided to get off the humira for the same reasons you stated above..i did not want to be at risk any longer for rare side effects. I started VSL and I dont eat anything fried or spicy anymore. I dont eat alot of red meat. I use enemas instead and I have been doign really well.
I would say go for it.
Posted 4/27/2010 6:17 PM (GMT 0)
It's hard to change what's working but it's great to hear she's still doing so well! I would say follow your intuition. I would personally wean off of the Imuran and see. It sounds like the drugs weren't working and that she was on the way to surgery before you made the dietary changes, used the parasite med etc? That would suggest that it was the other stuff and not the immunosuppresants which did the job. If you can wean off of the Imuran then maybe in the future you can start spacing the Remicade out further instead of stopping it altogether or lower the dose? Your story is very inspiring to me - we are still up and down but getting there I think (fingers crossed)!
Posted 4/27/2010 8:03 PM (GMT 0)
I'm currently on my second infusion of Remicade and my GI wants me to start 6MP again (50mg) to keep my body from developing antibodies to the Remicade. He said he'll keep me on it for no longer than 6 months. I'm also on Prednisone, down to 25mg. He did say the combination of Remicade and 6MP will make me extremely immunosupressed but feels it's the right course to take at this time as I'm still having some symptoms.
Posted 4/27/2010 9:12 PM (GMT 0)
I'm on 100mg of Imuran and 10mg of Remi every 6 weeks. I was originally on 150mg of the Imuran and when I went into remission, my GI cut me down to my current dose. It doesn't seem that he's planning on reducing it anymore, but I haven't asked about it. I'm so excited to be in remission with no side effects, I'm afraid I'll mess it up.

He has mentioned lowering the Asacol dosage. I would be very interested to see if he does reduce her Imuran dose. I certainly don't like being on all the Immunosupressants, but it's been worth it up to this point.

Please keep us informed!
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