I'm lucky that my MPA has gone into complete remission, except for some kidney damage. I've been able to stop my prednisone and now (!) I've been on 100 mg of Azathioprine for about 6 months. I'd like to know how long any of you used this drug and whether you had any side effects for stopping it too soon or using it too long.
Many thanks -
I was told that I would stay on it for 5 years and if I didn't have a flare then could start to reduce.
Some people start reducing in 2 years.
I was just due to come off it when I had a flare and had Rituximab but I stayed on Azathioprine after and am still on it so that is a total of 6 years 5 months. I am not sure when I will be able to start reducing yet though. I am happy to stay on as I don't have any adverse effects and everything is fine.
I have MPA and at the time of diagnosis March 2010 I had Kidney, chest and nerve involvement.
Good Luck
I was on Azathioprine for 18 years, as part of my cocktail to control cerebral vasculitis. It is normal for vasculitis patients to be on a maintenance drug like that long-term, for many years, or even life. It keeps your disease under control, and stops it coming back. Though I don't know what the normal protocol for MPA would be - sorry.
On the downside Azathioprine made me very very sick 
I used to be nauseous and sometimes vomit for up to 8 hours, every day, for years ... Eventually the medics gave me permanent anti nausea drugs twice daily on repeat prescription that help a lot. Having said that all the cytotoxic immunosuppression drugs seem to make me nauseous. So this wasn't unique to Azathioprine. It also made my hair fall out (not as dramatic as Cyclophosphamide, but over a much longer period, so very distressing) and gave me diarrhoea I needed more repeat prescription drugs to help with. But I stuck with it, because it was helping.
I didn't have Cyclophosphamide until nearly 20 years after falling ill, cos at diagnosis I was a young married woman, hoping to have children. Even though I said "Just give me the treatment!" So they tried Azathioprine on me. It induced a remission of sorts, but I relapsed 6 years later. And then came a decade of trying many many more treatments.
Thanks for your reply. You've travelled a tough road and I appreciate you sharing it with me.
I have CSS and have been on Azathioprine continuously for 12 years. Also on low-dose pred as every time I've reduced pred too much symptoms have returned.
I've had lots of warts which is a side-effect and occasional nausea but other than that, no problems.
I've been on azathioprine for almost 2 1/2 years. So far I have not experienced any side effects. My rheumatologist wants me to stay on for life until new research show otherwise or Im not tolerating. I was diagnosed with css jan 2014. I had significant nerve damage in my feet and left hand. The neurologist started me on three days of IVIG infusions then high dose pred and cyclophosphamide. Went into remission within 8-12 weeks of treatment then switched to azathioprine while slowly weaning off of pred. I did experience some hair loss from the cyclophosphamide but since on azathioprine, my hair has returned to it's normal thickness. Im off of pred and take azathioprine 50mg/day. I do get blood work and visit my rheumy for check ups every 3 months.
I do have sinusitis and experience loss of smell sense. Starting on antibiotics.
Wishing you all of best!
Hi, I started taking Aza to prevent MPA returning at the age of 16. Between 16 and 21 I stopped/reduced the dose 3 or 4 times. MPA returned each time which eventually led to the need for a renal transplant when I was 24. After that I continued to take 100mg Aza continuously for another 20 years. (At the time Aza was also used to help stop transplant rejection). It is known to cause a lot of warts/veruccas which I experienced too, and in my case also some hairloss, dependant on dose. More recently, with advances in transplant drugs and after not having MPA for >24 years, and because it contradicts some gout treatments (which I needed), and because of skin cancer risks, the Doctors became more keen to stop the Aza. I have been off Aza now for about 5 years with no issues. They also monitor ANCA more carefully now for me.
Hope that helps and is not too confusing.
RJ
My doughter has MPA.She was diagnosed 5 years ago.She was 10 years old.
She was on Cellcept for 18 months.
But she is taking second day Calcort 10mg.
Her dr.sad that this will be her terapy.
She is in drug induced remmision 4 years.
She live normal life.Her lung and her kidnay are in excelent condision.
hi Im on azathioprine for CSS. I first went on it about 4 and a half years ago & reduced it gradually to 100mg whilst slowly reducing steroids. Id been off steroids about 5 months when i had a flair. This time my consultant wants me to stay on a high dose of azathioprine longer as she feels is was too much to reduce the dose and come off steroids within that timescale. I've managed to come off steroids again after reducing slowly but my consultant wants me to stay on azathioprine for about another 4 years. I dont have any side effects so not really bothered. However when I reduced to 100mg i thought I felt better. Good luck. It tricky as everyone is different.
I've been on 100 mg of azathioprine for 8 years. Now with 5mg of pred. Renal Won't reduce any further in case of a flare. I've had MPA 8 1/2 years.
No obvious side effects
Thanks to all of you for your replies. I'm reassured by both the effectiveness and the minimal side effects you all experienced. I think I'm on the right path.
Best to all of you!
Hi NorwayGrace,
There has been some interesting responses. It is a very fine line that doctors have to tread between minimizing the amount potentially harmful drugs we take and avoiding a flare up. I have been in remission from MPA since 2012. I take Mycophenolate (Aza caused nausea and headaches so I was switched after four weeks). I have been recently weaned off pred without too much hassle, although I now notice a lot more muscle stiffness. So far so good, the disease has remained in remission. One of the main renal consultants I see is thinking about starting to reduce the Mycophenolate next year. The other consultant is a bit more hesitant because I have remained persistently ANCA positive which can increase the risk of a flare up. As with everything vasculitis, nothing is certain.
Chris
Starting Azathioprine
mpa vasculitis info please! 
Coping with MPA
Vasculitis MPA 
