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ever get off imuran?

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Ulcerative Colitis
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Posted 12/6/2014 7:05 PM (GMT 0)
I've been on Imuran about 3 years now. I originally was taking 150mg per day but i had to reduce that to 50mg per day since my body didn't take so well. I have had minor flares on and off bit generally have been ok. My last colonoscopy showed less inflammation but shows now there's a small chance it could be chrones. All of that aside, i can't seem to rest easy knowing I require such a toxic drug that may or may not be what's helping me but could be harming me in other ways. I also have a harder time motivating myself to keep healthy habits knowing I'm putting this chemical in my body anyways. Problem:I'm too scared to quit it in case it's working.
Question: at what point do you stop? I clearly can't take this forever. Had anyone stopped and continued to be ok? Any thoughts? I am fairly active and health conscious person but this one troubles me almost daily.
Thanks everyone.
Posted 12/6/2014 7:25 PM (GMT 0)
Well here's a study

http://www.ncbi.nlm.nih.gov/pubmed/25284134
Posted 12/6/2014 7:53 PM (GMT 0)
I was on it for a year or more. Decided the side effects weren't worth it, as they destroyed my quality of life. Was fine without it. Turns out I never needed it, though I can understand why my doctor put me on it (pancolitis diagnosis).

Peace.
Posted 12/6/2014 9:10 PM (GMT 0)
i'd say if it's keeping you in remission, then stay on it. 50 mg is such a small dose. obviously, the 5 asa's have less serious side effects but if you're on imuran, i'm assuming you tried them already.

i've been on 6mp/imuran for 4 years now. i only take 25 mg of imuran now just because i reduced it myself since it has never kept me in remission. i don't notice any difference being on it without the other drugs i take.
Posted 12/7/2014 3:43 AM (GMT 0)
I'm taking the 5asa along with Imuran. The 5asa didn't seem to work alone.
Bananagirl, have you ever stopped the Imuran?
Posted 12/7/2014 4:19 AM (GMT 0)

rharmon said...
Well here's a study

http://www.ncbi.nlm.nih.gov/pubmed/25284134

this study seems well done. good sample size. so, 12% to 25% chance of more than mild flare within a year.

on the other hand, you aren't taking very much. I would want the test to see if you are getting a therapeutic level. if not, the case for stopping gets a lot stronger.
Posted 12/7/2014 4:49 AM (GMT 0)
yeah, i stopped it probably 3 or 4 times.
Posted 12/8/2014 3:09 AM (GMT 0)
DB, how do you test to see if you're getting a theraputic dose? Blood test?

Banana girl, I'd give it a try and go back on if i needed but I've heard it is less effective each time. Have you noticed or heard that?

Thanks guys :)
Posted 12/8/2014 3:11 AM (GMT 0)
i'm not sure to be honest. it never kept me in remission on its own. the times i stopped it were when my liver enzymes were too high so i was giving my body a break. i still flared on it and off of it whatever the dosage was.
Posted 12/8/2014 3:51 AM (GMT 0)
Yeah i had to get off once when my white blood cells dropped too low. Was on 150mg then, only 50 now.
Posted 12/8/2014 8:45 AM (GMT 0)
I'm in remission with 125/100 mg alternating on its own. I will not stop unless I'm on the verge of toxicity. It keeps me in remission and I haven't had any side effects in the long run. Some nausea in the beginning but I take this over pooping blood any day.

rharmon, thanks for the study. I know in my case, I will definitely flare if I get off Imuran. I'm done with prednisone (osteoporosis), 5-ASA don't help (do you get immune to them after a while??) and biologicals don't help or limited. Immunesuppressants are the only thing which really helped me long term so far.
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