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Have any on you gotten off of 6MP or Imuran?

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Ulcerative Colitis
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Posted 6/2/2010 11:06 AM (GMT 0)
I don't mean you stopped using 6MP or Imuran because it didn't work or it made your liver tests go out of whack or because it made you extremely sick.  I mean once your flare was under control were you able to slowly lower your dose off of them.  Once your flare was under control I was wondering if any you were able to go onto a 5 ASA med, oral and rectal and stay on them and stay out of a flare and out of trouble.  I started on Asacol, went on the Imuran, have gotten things under control nicely, lowered my dose of Imuran and will ask my GI doc about lowering it again when I see him this fall.  In the future I was just wondering if I can ever get off of this med.  Have any of you gone through this?  Thanks in advance for your help.

MyUC

Posted 6/2/2010 11:37 AM (GMT 0)
That is a very interesting question that I wouldn't mind seeing an answer for. I wished I could stop my 6mp but I have a feeling that as soon as I did, I would begin to flare crazily.
Posted 6/2/2010 11:43 AM (GMT 0)
let's see what the people say.  The reason I ask is that I guess I have had really poor GI docs in the past.  Never once was the probiotic ever mentioned, never once was the concept of rectal enemas brought up, etc... Heck even the concept of UC staring in the rectum and traveling up was never made clear.  Now that I understand a lot of these concepts I was wondering that if I treat it properly has anyone gone back to the 5-ASA meds once they have been on these immunomodulators? 
Posted 6/2/2010 12:25 PM (GMT 0)
There are some good GI's and a lot of bad ones it seems! I have a lot of confidence in my GI and he has always done what was right. And what I really like about him is that he wasn't quick to throw me on steroids to tame a flare - in fact, I have never been on oral steroids for my Uc. However, he didn't say anything when I mentioned I was on a probiotic nor did he recommend it. And after flaring for a while, he mentioned changing my diet - but this was after I was already with him for nearly 12 years. It seems docs are hesitant about saying anything that isn't "mainstream".

But he did tell me when I first started 6mp is that if my body could tolerate it that I would have to be on it long term. Long term is subjective I suppose. For me personally, I don't do well with 5-ASA's so my options are limited. If I could manage to keep my Uc in check with my Colazal alone then I would be all for it because even though I adjusted to 6mp I find that I am still fatigued to a certain degree every day. It's not enough to interfer with my life but it is noticable.
Posted 6/2/2010 12:54 PM (GMT 0)
Ditto Red34:

I understand completely that 6MP or Imuran is a long term drug and I can accept that if I have to.  I am happy to have gotten my UC under control so I am not dead set against it.  I have just read a few posts about people have gone on certain stronger meds such as Remi only to have gotten off it later.  There are tons of people here who have in their signatures that their past meds were 6mp or imuran and now they are back on Lialida, etc...  So in the end if need be I will take it indefinitely, I was just wondering.

MyUC

Posted 6/2/2010 2:59 PM (GMT 0)
Honestly, I would not WANT to taper/go off my azathioprine if it was keeping my flares under control as is.

My doctor is pretty good, he does not bring up unconventional treatments with me, but if I bring them up he has no issues discussing them with me and supporting my choices. For example, when I brought up probiotics he wrote me a script for florastor (but my insurance wouldn't cover it) and when I asked about helminths he said "I have no idea where to get them, but I've recommended them to a friend's wife before. If you can find them go for it". Once again, money issues lol.
Posted 6/2/2010 3:38 PM (GMT 0)
Malkavian:

It's also out of curiosity.  I am happy I am doing well on it but deep down I would much rather take a less serious class of drugs if I had to take drugs at all.  But I get your point of view, respect.  Anyone else out there got an opinion on this?

MyUC

Posted 6/2/2010 8:08 PM (GMT 0)
Over four years ago I stopped taking Azathioprine. I had achieved remission, however I was losing my hair and had no energy so I made the decision to stop taking it, against my Doctor's advise. I was very fortunate to remain in remission for over three years (with the exception of two mild flares which were quickly brought under control with rectal meds). I have now been flaring since Aug 09 and cannot get it under control, so will more than likely be starting 6-mp once I return from my holiday. According to my Consultant I would probably not be flaring now if I had continued to take it.
Posted 6/2/2010 8:12 PM (GMT 0)
At the time I took 6MP which was in the late 1990s my GI said that if it had worked he would have kept me on it for 5 years. After 5 years he would have transitioned me back on to 5ASAs.

Sue
Posted 6/2/2010 9:41 PM (GMT 0)
I came off AZA last August. I did fine on it, but wanted to see whether it was possible to cope without it (for various reasons I was never 100% convinced I needed to be on it). My consultant said that it could get up to six months for my body to get back to normal so I shouldn't expect to flare immediately. I'm in remission now (and pregnant). It's been wobbly - I've recently had a small flare that I got under control using mesalazine enemas. However, I'm happy not to be on it and hopeful I'll manage to do okay for the foreseeable future.
Posted 6/3/2010 4:33 AM (GMT 0)
I went through the 6MP with some bad side effects. I mentioned this in another post so I'll try to be brief. I was on 12 Colazal, 3 Entocort, Canasa, Colocort enema, and still flaring when started on mercaptopurine 50mg. After 2 or 3 months, I was taking 3 50mg 6MP daily. My GI didn't order any further monitoring and I started having bruising and dark urine, and looked and felt like warmed over death. When I informed the GI of what was going on, I was taken off the 6MP cold turkey. It took weeks but, finally felt better and the flare seemed to have calmed down. If you are put on 6MP, insist of regular blood monitoring. It's pretty serious medication. I hope it works for you without side effects but keep a close eye on blood levels as long as you are on it. Good luck.
Posted 6/3/2010 11:57 AM (GMT 0)
Thanks for the replies.  I will see what my colonscopy shows this fall and I will talk to my GI doc about the future in terms of staying on it or getting off of it.  Thanks again

MyUC

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