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

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 

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.

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.

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

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

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

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

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...)

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

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."

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"...

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...