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what happens when you stop immunosuppressants?

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Posted 10/23/2011 8:53 PM (GMT -5)
just curious, really. i'm still on all the stuff listed below and want to know what would happen if i gradually went off of everything. i REALLY don't want to suppress my immune system for the rest of my life. it just seems wrong to me.

would my immune system go back to attacking itself or could i get by on less severe drugs? i'm just terrified of all the long term side effects of being on them. i see my gastro again on nov 2 and i'm just gonna see what he says. i'm sure he'll say that i will flare again but i know some of you guys aren't on immune system suppressing drugs and you're okay.
Posted 10/23/2011 9:37 PM (GMT -5)
I think it depends on how your body reacts. If your immune system is overactive, it will probably go back to attacking but it will take a few months for the drugs to leave your system. I have stopped 6mp for a month or two and I didn't have any negative side effects from stopping it, I didn't flare up either but I never intended on stopping forever, it was just temporary until my WBC recovered. I don't like the idea of being on these drugs forever either. Hopefully there are some better treatment options available in the near future. It's possible you will be able to remain stable with 5ASAs, have you tried any? I flared while on Asacol - it seems pretty clear in my case that it was no longer working well for me.

It is a bit risky to stop Remicade, I have heard people say it is not as effective if you use it again in the future. I have seen a few people who were able to stop and restart it successfully as well.

Posted 10/23/2011 9:51 PM (GMT -5)
Without the aid of other drugs, chances are things will flare again, but even once you've been on the biologics, you can still induce remission from other drugs (for me it was aggressive topical therapy with steroids and mesalamine).

But your immune system can go back to normal--I just got "normal person sick" as I call it, for the first time since I was diagnosed. Since diagnosis, I'd get a lot of infections (ear infections, sinus infections, skin infections) both on and off the immunosupressants. But I just got a normal cold and I was able to recover without a doctor's visit and just a bit of OTC cold medicine. That hadn't happened in years! So, yes, you can get back to normal.

That said, notsosicklygirl is right, my GIs say I no longer have Remicade or Humira as an option--but it can be possible for some to go back on.
Posted 10/24/2011 3:21 PM (GMT -5)
     How are you feeling?  You know you have to taper the prednisone.  My GI doctor took me off the 6MP two weeks prior to starting Remicade.  Actually, the prednisone was the ONLY drug which worked for me but it gave me osteoporosis, high blood pressure and high glucose levels.  Had surgery last year.
Posted 10/25/2011 10:51 AM (GMT -5)
Here's some data from a recent 2011 CCFA webinar. The doctor was not surprised by the relapse rates, but was very interested in eventually trying to identify the 20% of people who will not relapse after stopping the meds, so they can be safely weaned from these meds. I do not think there is a lot of date on stopping remicade (INFliximab) in UC patients.

"Summary
• Stopping 6MP/AZA/INF in IBD is
associated with high rates of relapse
Approximately 50% at 1 year
Up to 75% at 5 years
• 20% of pts may be able to stop treatment
Short duration of IBD prior to
IMM/Biologics
Deep remission for a long time
• Until immuno-environ-genetic predictors
of who will relapse – continue treatment"

You can find the full CCFA webinar at:
http://www.ccfaibdwebinars.org/
The info above is from "the latest in genetics, risks and therapy management in IBD".
Posted 10/25/2011 3:42 PM (GMT -5)
I feel the same way, and am considering surgery if I flair again. Sounds like people get other things on Remicade, like joint pain. Have you heard this?
Posted 10/25/2011 4:22 PM (GMT -5)
i figure i will eventually get off of the meds and if i flare again, then i will just get back on them. i'll never know if i can go without them if i don't try. i mean, when i had my first flare at 17, i went 4 years with no medicine until i flared again.
Posted 10/25/2011 5:14 PM (GMT -5)
Would doubling up on another medication while still on an immunosuppressant, then tapering down be sufficient? My doctor said he wants me to do that once I plan on getting off Imuran. He doesn't want to put me in a flare, so he suggested that.

I thought that would be logical and safer.
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