for those taking Imuran

[DEE]

how long have you been taking it or been told that you will have to take it for ?
Just been reading notes i made at my last wg consult just checking i heard him right before i talk to him again
dont know if i can blame preds for brain malfuction as im lowering them at the moment

[Jack]

It may be different today, but the treatment plan that I was on 20 years ago switched me from Cyclophosphamide, then on to Imuran (Azathioprine) for about 6 months and then to Neoral (later changed to Cellcept) for maintenance. I believe that some patients these days stay on Imuran and don't make the last move. This may be because there is an intention to withdraw the drug altogether whereas in my own case, I need continuing treatment due to transplant.

[DEE]

thanks Jack that makes sense.i tried Cellcept after ctx but had problems with it
symptoms started to appear again within a few days hoping Imuran works because mxt did not work either
fingers crossed

[julia]

I have been on Imuran for about 6 months. I have no problems with it. The doctor said I will be on for 1-2 years.

Best of luck.

[andrew]

I've been on Imuran for about....wow...must be getting on for five or six years now. No ill effects that I know of! My ANCA bobs up and down but on average stays the same.

[pberggren1]

I've been on Imuran for about....wow...must be getting on for five or six years now. No ill effects that I know of! My ANCA bobs up and down but on average stays the same.

Why so long on Imuran? Is it because everytime you try and wean off of it symptoms come back and ANCA rises?

[andrew]

Haven't ever been weaned off it to know (except for when I forget to take it!). When I don't take it I do notice symptoms coming back but that's a sudden stop rather than a tapered one and ANCA has never been measured in the process. To be honest I've never even considered asking about weaning off it. I have an appointment with my WG doc this month some time so might ask him.

[pberggren1]

Haven't ever been weaned off it to know (except for when I forget to take it!). When I don't take it I do notice symptoms coming back but that's a sudden stop rather than a tapered one and ANCA has never been measured in the process. To be honest I've never even considered asking about weaning off it. I have an appointment with my WG doc this month some time so might ask him.

That down right scares me Andrew.

My doc said that he would induce remission with ctx for 3 months and then switch to a maintenance drug like Imuran for another 12 and if things looked good taper down over the next 2 to 3 months to nothing. He said there is no point staying on stuff like Imuran or Cellcept long term if it does not warrant it, like increased ANCA and increased Wegs symptoms. He said long term use just jeopardizes the patient in the long run.

[DEE]

hi Phil never say never as we are all so different
i was on mxt for 8mths ,cxt for 12mths and cellcept for two weeks !!
ive started Imuran two weeks ago and was told i would be on for two years a the least possiably more if needed to keep symptoms at bay
thanks Andrew you have put my mind at rest as i thought i had not heard him properly but now i understaand
at the moment still having problem with joint pain but i think its due to tappering preds too and it been early days for new drug i hope
thanks again DEEx

[elephant]

I had a kidney transplant over 20 years ago and I will never be off immunsupressants. I don't know if I will get off cellcept anytime soon, what I keep hearing...is that I am a different breed/complicated case...ect...but I think everyone is different. When I went to see my WG specialist in June, she didn't know when I would be off cellcept...I am taking four meds to keep WG in remission. I know the dangers of being on all these meds long term, my hope is to get off one of these meds next year.