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When to know to stop imuran?

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Ulcerative Colitis
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Posted 11/4/2013 4:59 PM (GMT 0)
Hello all. Well I will try to keep this nice and short. When do you know to stop imuran? Once I stop imuran I will officially be drug free. I stopped taking remicade in the summer this year and have been totally fine since. My GI believes it's okay for me to start the taper off of imuran (currently on 150mg/day) but I am a little hesitant not knowing if THIS is the drug that is keeping me in remission. He has suggested I start the taper at 100mg for one month, then 50mg for one month, then done. Has anyone else been in a similar situation? If so I would like to hear about it, all opinions welcome, thanks.
Posted 11/4/2013 5:06 PM (GMT 0)
Most people with UC have to take some kind of maintenance medication to keep UC in remission. Why does your GI think you can go med-free?

Sue
Posted 11/4/2013 5:58 PM (GMT 0)
Yeah. That is a very huge mistake to go med free. We would all like to be med free but the reality is there is a very high chance you will relapse in the near future by going med free and future flares usually will get harder to treat where Remicade and Imuran won't work anymore. It's really taking a chance and most people lose and regret it very much.
Posted 11/4/2013 6:10 PM (GMT 0)
I wouldn't go completely med-free, to be honest. Why does your GI think it'll be OK for you to stop it? GI's very rarely suggest that one should stop maintenance meds.

Did you ever try the mesalamine-based drugs? If not, I think it would be reasonable to start using them (say, Apriso or Lialda plus a twice-weekly Rowasa) a couple of weeks before you plan to start your taper off of Imuran.
Posted 11/4/2013 7:02 PM (GMT 0)
I have been med-free for about 2 months due to my own choice. Lower class of drugs made me worse, I am allergic to Imuran, and bioligics cause migraines. My doc wants me on Uceris but it was discovered I have low bone density. Therefore I am hesitant to take something that contains a drug known to cause further damage.

My thought process, right or wrong, is that if I do flare I don't have options except for surgery. And I am fine with that because it is my choice. Tomorrow I could change my mind but right now I do not want to be on a body damaging medication while I am in remission.
Posted 11/4/2013 7:09 PM (GMT 0)
cb: What put you into remission?
Posted 11/4/2013 8:50 PM (GMT 0)
When I stopped Imuran I flared and had a hard time getting it under control again. I always say: chronic illness - chronic med use. Sorry.
Posted 11/5/2013 12:40 AM (GMT 0)
I agree. Once deep remission escapes you, getting the disease back into its cage is darn hard. Remi may not be an option, and others take a long while to get to therapudic levels. We were reminded, or shall I say, slapped, by the 20x day bathroom visits.
Posted 11/5/2013 8:45 PM (GMT 0)
Cavalier 9 is your colon clear? When was your last cscope? You can try Asacol, Pentasa, or something like that when stop Imuran.
Posted 11/12/2013 3:03 PM (GMT 0)
Thanks all for the replies, and sorry for my late response. I also think it's a good idea to go on something like the asacol or pentasa if I do decide to come off of the imuran. Although, I believe I had quite a bit of nausea when I was on those meds before. Is it bad to just stay on imuran for the long term? Maybe just lower my dose and stay on it? My last scope was about 6 months ago, and it was completely clear, clean, no inflammation.
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