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Has anyone ever been able to get off 6mp or imuran with success

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Ulcerative Colitis
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Posted 9/24/2007 1:33 AM (GMT 0)
Hi Guys, I have been on Azathioprine(generic for Imuran) for about 7mos. I'm feeling better, but definitely not 100%. I was just wondering if anyone has ever been able to get off of the these drugs and stay in some semblence of remission? Thanks

Donna 

Posted 9/24/2007 4:42 AM (GMT 0)
I went off Imuran several times, once when I was pregnant (about 13 years ago) because they told me not to get pregnant while on the medicine and actually did well for over a year. I had a small flare up and went back on it though along with prednisone. Most recently I was off all meds for a couple of years and quit smoking which caused a huge flare up and surgery to remove my entire colon. I blame myself for thinking that I would be fine and I didn't need the help of any medicine ( I had UC for 16 years and did very well with only 3 hospitalizations- 2 because I hadn't taken my meds) Please, please always keep your doctor informed and stay on your meds!
Posted 9/24/2007 1:06 PM (GMT 0)
There is no cure for this disease. It is a life-long, chronic illness that requires daily treatment -- in your case and mine, that includes taking your Imuran each and every day!

Imuran is a maintenance medication -- as are so many of the meds we take -- to get you into remission and keep you in remission. If you don't take them, sooner or later, chances are very, very great that you will have another flare.

It's best to keep taking your meds and not risk another flare and the possibility you will be unable to get that under control and have to take even more drugs and/or have surgery.

Stay on your meds. It's your best hope for a normal life and to avert another flare!

Mitz, on Imuran for approximately six years.
Posted 9/24/2007 2:12 PM (GMT 0)
My doc put me on an immunosuppresant, but I never felt it helped me and the side effects were devastating. I've been able to manage my UC fairly well with only azulfadine, strict diet and a variety of natural supplements.
Posted 9/25/2007 1:34 AM (GMT 0)
Absolutely. I've been on Imuran for a year and a half, and it did nothing for me really... Got in a terrible flare while taking it, switched to corticosteroids, and once I got into remission got off those as well. I'm only taking Asacol ATM.
Posted 9/25/2007 2:49 AM (GMT 0)
Thanks for your responses. I wouldn't get off any of my meds without Dr.'s supervision. I'm just nervous about being on an immunosuppressive forever. I'm having a little flare right now, but it seems quite a bit more mild than it used to be. Thanks again.
Posted 9/25/2007 1:05 PM (GMT 0)
Perhaps a call to your GI and a script for rectal meds is in order to get that flare under control. I've had a few minor flares with my Imuran, but steroid enemas or Rowasa really get things shipshape again in a hurry.

Oh, I see you have "Rowasa enemas as needed" in your signature. If you're using those, perhaps a more regular course is called for right now.

Good luck!
Mitz
Posted 9/25/2007 7:11 PM (GMT 0)
I have wondered this as well.  I've been on Imuran for a few years now...I think 3 now??  I have had ZERO flares on this drug and ZERO bad days.  I would love to not have to take any medicines for my U/C, but if this is what my life will be like permanently on Imuran, then I will take it. :-) The more time goes by, the more I think "why the heck would I want to go off?"  I just wish I could get the wasted prednisone years back!

Michele

Posted 9/25/2007 7:51 PM (GMT 0)
That is so great that you are feeling so well. I guess if I was under complete control, I would feel better about the drug. I know a couple of people that have been on these drugs for quite some time with no ill effects.

Thanks

Donna
Posted 9/26/2007 5:30 AM (GMT 0)
Michele, it's great to hear that you're doing so well and let me just say you have nothing to worry about. Imuran is usually taken by transplant patients to prevent transplant rejection, and they take MUCH bigger doses than IBD patients, yet they can live for decades with this therapy with zero complications, so you can rest assured that Imuran can be a lifelong therapy for you as well (if needed). The potential sideffects of Imuran pale in comparison to long term Prednisone, and are rarer, while I'm sure most of us have felt at least one vicious sideffect of Prednisone... In the end it's all about quality of life - if Imuran has given you that quality, at the cost of a pill or two a day, I say don't try and fix it if it isn't broken ;)
Posted 9/26/2007 5:27 PM (GMT 0)
Doc, I feel exactly that way most of the time!  "If its not broken......"  

My gastro who I have been seeing since I was 19 (Im 36 now) used to throw out Imuran as "the big bad drug".  He would say "If pred doesnt work this time, we'll have to go to Imuran." I was so scared!  I was trying to envision drugs WORSE than prednisone.  I can tell you all after having colitis since the age of 1, I havent had worse than prednisone.  I have had many drugs not work, but nothing compared to the panic attacks and joint pain I lived with.  I was expecting to get sick on Imuran, but as you said, the side effects are definitely more on the rare side. 

I just had blood tests done (promethius) for the 2nd time, and got my dose pumped up again. Now I am at 150 mg.  Its weird to feel healthy, but get your drug dose upped.  I trust they know what they are doing! 

Donna, how long have you been on Imuran so far?  I think it took me several months to really say "WOW..."  Getting healthy was in combination with getting 70 mg of prednisone out of my body.

I wish you good luck...I think this drug saved my colon and my sanity.

Michele

Posted 9/26/2007 5:34 PM (GMT 0)
This is interesting as I've been on Azathioprine for about a year and a half and it has worked great for me too. My doc has said that I can try and come off it on the two year mark. Obviously I'm worried about flaring again and having to go on steroids, but I do feel it's worth a try to see if I can stay in remission without it...has anyone else been advised to try to come off after 2 years?
Posted 9/26/2007 5:44 PM (GMT 0)
Michele, I've been on Azathioprine for about 7 mos. now. I was doing really well after about 3mos. then i had some super, duper stressful things happen and I'm flaring again. Its not a bad flare, yet. So, I'm pretty nervous. The flare is not bad enough to get on pred. and I will do everything I can NOT to get back on pred. So, I'm hoping I can get back to "normal"....whatever that is.

Donna
Posted 9/26/2007 9:59 PM (GMT 0)
Joz:

Why is your doc taking you off this if it's working and you're not having side effects?

I don't get that. Especially since this particular drug takes such a long time to kick in and start working once you start on it.

Mitz, on Aza for six (relatively speaking) flare-free years.
Posted 9/27/2007 1:52 AM (GMT 0)
Mitz and Michele - have you guys lost much hair on Imuran? for me, so far, that's been my only real side effect. i am very aware of the hair loss. IIt may be more in my imagination than in reality.... how about you? (by the way, hello again, Mitz....! I hope you're doing well...)
Posted 9/27/2007 10:41 AM (GMT 0)
Hi Mitz,
It seems that is what they do over here (UK) unless, I guess, someone says they don't want to come off it. The last time I went in I asked how long I am expected to be on it and that was the answer I got. I was really surprised actually as I thought that I would have to be on it for a lot longer before coming off, especially since the consultant had said from the beginning, when I was only taking Asacol, that it probably wouldn't be enough to keep me in remission due to the severity of my flares (which it turned out he was right even though I resisted for a while).

I am quite happy being in remission and feeling the way i do now but am not completely happy about being on immunosuppressants as everyone would be. It was mentioned that at the same time as trying to reduce and come off it, I could have a colonoscopy to see what's going on exactly, which is a good idea I think. At the end of the day, if I can stay in remission without azathioprine that would be great so I suppose it's worth a try but on the other hand risking another flareup and another course of steroids is enough to put you off. Tricky.
Posted 9/27/2007 12:33 PM (GMT 0)
UCinNC: I don't have the hair loss problem that some folks evidently experience. I know when I comb my wet hair after a shower, I always get quite a few strands, and I see quite a few strands in the shower, but i don't think it's any more than normal. At least I don't feel like my hair is thinner or there's less of it.

Joz: Good luck with going off the Azathioprine. My understanding of this drug's use in treating UC is that it's a maintenance drug, designed not to so much get you out of a flare (like prednisone would), but to keep you flare-free. If that is the case, it seems counterintuitive to go off of it. I think of my immune system like a simmering pot, and when it boils over, it attacks my colon and I have a flare. The Imuran/Azathioprine keeps the heat down just enough that the pot doesn't boil over.

Unfortunately, when you are starting a course of Imuran to try to "turn down the heat" to prevent the pot from boiling over, it takes a long time to effect that change, so I guess I see that as another reason why going on and off the drug just makes no sense to me.

But best of luck to you, whatever you decide.

BTW, if you are maintaining remission at only 50 mgs of Imuran, you are at quite a small dose. Another reason to perhaps reject the advice of going off and risking a flare???

Mitz
Posted 9/27/2007 12:51 PM (GMT 0)
I actually asked my GI about this yesterday. I have been on Imuran for over a year and was curious as to whether I would ever be able to stop taking it. My GI said he wants to see 4 years symptom free and then we can discuss it. At this point I am too scared to rock the boat and have no problem continuning to take it. I do feel I get sick a lot easier and for longer periods of time....guess I just have to deal w/ this!
Posted 9/27/2007 1:08 PM (GMT 0)
My liver enzymes went up so I pulled myself off it (6mp)... I feel fine.. Doctor says "Hey if you feel good ..I feel good."
Posted 9/27/2007 2:51 PM (GMT 0)
I havent had hair loss either.  I have very thick hair, so I proabably wouldnt notice unless it was extreme.  I had huge hair loss on Rowasa though.  I lost 1/2 I swear in 6 months.  I was so scared. 

I dont know what my Dr. would say about going off Imuran anytime soon...He really feels this is keeping me in remission.  3 years in remission hasnt happened for me since I was a teenager.  My flares are so hard to get over, and with 2 small boys and a job, I dont have time for more complications if I dont have to.  I work with kids as well, and did expect to get sicker on Imuran with colds and such...but that was temporary.  I think my immune system holds up pretty well..and I am on 150 mg.

 

Posted 9/30/2007 7:39 PM (GMT 0)
I work with kids too and so far haven't been getting sick hardly at all even when everyone around me is - how does that work? I did get a cold a couple of weeks ago and was scared I wouldn't be able to egt rid of it since my last blood test results weren't good- the white blood cell count and some other immune defense marker had dropped quite low, but within a week I was better - it's quite confusing this whole being immunosuppressed whan our immune systems were in "overdrive" attacking us anyway. So doesn't it just bring it back down to normal?
I was told by a GP once that they aren't supposed to call them immunosuppressants anymore but "immunomodulators" as they don't just suppress the immune system but change the way it works...?

Mitz: I'm on 50mg as I have "the enzyme" that means I metabolise it differently and half the normal dose works in the same way as the full dose would on someone who doesn't have "the enzyme"...
Posted 9/30/2007 11:11 PM (GMT 0)

Joz, do you remember what you WBC count is? Mine is low as well. I think its 3.7. I am being watched but it was low even when I wasnt on this drug. So much for getting off Aza anytime soon, it doesn't seem to be working at the amt I'm taking(100mg) so they may have to raise my dosage.

I haven't gotten any colds either, knock on wood. Its time for the flu shot too!

take care

Donna 

Posted 10/2/2007 10:12 AM (GMT 0)
Hi Donna,

Sorry, I don't know what my WBC count was - I didn't ask?! But I know that since I've been on the Aza, my count has been in the normal range and then dipped for some reason - got the GP surgery panicking and phoning me telling me to stop my medication. Lucky I've got more sense than to listen to them - they don't even know what I'm on it for and always direct questions to the reumatology dep of the hospital!

Anyway after the next blood test the WBC had gone back up to normal and the other one (not sure what that was) was almost normal. My consultant just told me to be really careful when my counts were low and that if I did get any kind of infection that I may have to stop the Aza for a little while to fight the infection....? that's why I was surprised that my body managed to fight a cold all by its little self at that time!

I don't know what to do about the flu shot either as I know they supposedly sent me out a letter last year as I saw it on my records, which I never received and when I asked them about it they told me I wasn't in the risk category? very confusing...

Posted 10/2/2007 1:45 PM (GMT 0)
I would advise anyone to get a flu shot. It can't hurt and it certainly can help prevent flu.

My doc said "yes" when I mentioned I was on Imuran. He also gave me a pneumonia shot.

Get your flu shot every fall. Most insurances pay 100% of the cost because they don't want to pay the costs associated with treating flu -- and neither do you.

I've had a couple of episodes of bronchitis and pneumonia. Being self-employed means I don't get paid if I can't work. DOUBLE OUCH!

Mitz
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