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Discontinuing Imuran???

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Posted 8/9/2011 5:11 PM (GMT 0)
Hi all!

Haven't been on the forum in quite a while, but I thought you all would be able to answer a question for me.

I have been in remission for about 2 years now.  Doing wonderfully. 

My cholesterol numbers are SKY high (283).  My PCP has tried everything "herbal" and diet wise with me and it hasn't gone down (actually went up the last 3 months). 

Due to the interactions with cholesterol medications and Imuran she will not prescribe me a cholesterol medicine.   She had me see my GI and ask him if I can go off Imuran.

Long story short, I saw him yesterday.  He kind of smiled and said "You are going to like a statin for your cholesterol, it'll bring your numbers down to 150.  You can quit the Imuran cold turkey!"

I was expecting a taper or something...he said no, not necessary.  I said, "Can I go back on it if I flare?"  He basically said, why bother, there are great benefits of taking a statin and then I couldn't take the statin again.  He said "there are other things you can use if you flare!"

What has been other people's experience with this?

Thanks guys!

Jen

Posted 8/9/2011 5:31 PM (GMT 0)
Jen O:

Sorry if I can't answer your question directly but I can try to help.  Imuran helped me tremendously as well.  It has put me into a solid remission for the last two and half years.  I have asked my GI to taper me down but that's coming from me.  I believe my GI doc would like me to stay on Imuran indefinitely and I want to go off of it I could consider stopping it after 5 years.  He has given his blessing to drop from 200 mg to 150 mg to 100 mg at this point.  So far now all is good.  I do believe one can quit cold turkey, I am just doing this because I am afraid to lose my remission.  My GI doc says the Imuran is to keep my overall colon in check and the canasa to keep the rectum in check. 

What about the ASA meds along with some rectal meds?  I would ask about that.

MyUC

Posted 8/9/2011 5:37 PM (GMT 0)

MyUC,

Thanks for your reply.  I am taking Apriso at the maximum dose, which is one of the delayed release 5 ASA drugs (like Asacol HD and Lialda).

I am only on 100 mgs of Imuran / Azathioprine.  I have been on it for about 2 1/2 years total...

Jen

Posted 8/9/2011 5:47 PM (GMT 0)
To me, what's more fascinating is the doctor telling you to quit Imuran because you're "cured" of UC. That is crazy...how did you cure yourself lol. A fairy waved a wand?! I want the fairy also. :D
Posted 8/9/2011 5:51 PM (GMT 0)
Dude...

I don't think I said that he said I was "cured" of my UC.  He just was implying that if I do have a flare, I am not out of options...

Jen

Posted 8/9/2011 6:11 PM (GMT 0)
and the rectal meds? have you not tried them yet?

What other liver enzyme levels were high as well?

q
Posted 8/9/2011 6:18 PM (GMT 0)
I agree that there are other drugs you can use but what drugs is he speaking of? Remicade or Humira? Those are usually the next step after Imuran and if those don't work (they work for 50-60% of people) then what are the options? I would ask him about this but I don't think you can continue to take Imuran if you have problems with cholesterol and the medications have a reaction.
Posted 8/9/2011 6:20 PM (GMT 0)
Quincy,

I am not having a flare right now.  In the past I have used 5 ASA enemas and suppositories (not both @ the same time, thankfully!)  :)  I really have had no symptoms of my UC for 2 years.  I was just posting wondering what experience people have had with getting off the Imuran / AZA.

I have (faithfully) gotten my bloodwork done every 3 months.  My liver enzymes have stayed fine.  A couple of times my billiruben was fine, but it settled out both times when I re-tested a month later.

Thanks!

Jen

Posted 8/9/2011 6:29 PM (GMT 0)

Sickly,

I see a GI doc in a major medical center (the Cleveland Clinic) that is involved in many clinical trials of IBD patients. 

I was a Remicaide patient for about 9 months a few years ago and he is aware of it.  (was still in the midst of a big flare, going for infusions every 3 weeks and my TPMT numbers were indicating it should be working, so they took me off of it) I am not sure what the "other options" are right now, maybe I won't have to cross that bridge right now.  I'll keep my fingers crossed.

Jen

Jen

Posted 8/10/2011 9:29 PM (GMT 0)
OK, one thing that is not clear to me is, what will he prescribe to you should you go in flare? I am also on Imuran and would love to quit but don't know what will I get for the flare up and I want to stay at arm's length from Humira or Remicade. (On the contrary, my cholesterol number is too low, 135 total 25 HDL)
Posted 8/10/2011 10:47 PM (GMT 0)
Delta,

He told me that if I weren't going on the cholesterol medicine, it would also be an option to discontinue the Imuran as I have been doing great for so long. Imuran is something you can start and stop when needed he told me. I think maybe the philosophy is changing as it used to be a "maintenance" drug that you stayed on indefinitely. (I read journal articles and have seen that in a couple of studies lately)

So for you, as your cholesterol numbers are fine, you could go back on the Imuran if you had a flare after you went off it.

Jen
Posted 8/11/2011 2:26 AM (GMT 0)
Jen O:

My GI doc also mentioned that he has seen and read of patients who have gone into remission on Imuran only to stop it once in remission and stay in remission.  He went on to say the consensus at this point is that Imuran is to be used indefinitely for UC but there are well documented people who have been able to stop using Imuran and have no adverse effect from not using it.  I don't know if this point helps at all but I did want to chime in that I kind of agree with your last post.  Also I know of GI docs who start off with Remicade and once the UC is in control move down to immuno modulators to move down to 5-ASA meds and rectal. 

MyUC

Posted 8/11/2011 2:47 AM (GMT 0)
Wow glad I found this post.

I stopped taking Imuran (Azathioprine) about 2 months ago. I decided to take myself off Asacol and Imuran...maybe a bad decision but I wanted to try something else. I was in remission and felt good.... I wanted to start working with "Standard Process" natural stuff - currently taking Okra Pepsin, Boswellia, among other things....

Reason I say it may be a bad decision - I am now in a flare....blood, mucus, cramps, urgency... I am pretty pissed about it... I was really hoping I could get off these meds for a while and give my poor liver a break!
Posted 8/11/2011 2:43 PM (GMT 0)
Imuran has given me my life back with no side effects whatsoever.
I've been on Imuran for almost 8 years now.
I'd like to get off the meds, give my body a rest , but every time I try, a flare happens.
I've come to the conclusion that the benefits far outweigh and potential risks. It's important to get blood taken regularly so the doc can see any red flags. But given all the options, to me Asocol, & imuran are not bad at all compared to surgery, remicade and the rest.
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