Taking Azathioprine?

[Rod-J]

Hi, I have MPA and had been taking Azathiprine 100mg for almost 25 years. Is anyone being advised by their consultants to come of long term Azathioprine as I am?

[AndrewT]

Dear Rod-J

I have been on azathiaprine,150mg, for about fifteen years now. In my case the advice is to stay on it! have 'they' offered you an alternative? Please will you you let me (us) know?

Many thanks and good health (or as good as possible!)

AndrewT

[vivdunstan Volunteer]

I've been on Azathioprine for 15 years as well. Why are they advising you come off it? Have they given you any explanation for this? I need the Azathioprine, plus many other immunosuppressive drugs, to control my far-too-active cerebral vasculitis.

[Rod-J]

Thanks for the replies. The Dermatologist has always been keen for me to reduce the Aza dose or come of it altogether due to risks with skin cancer and other skin conditions like warts. In addition recently I started having attacks of gout. As the standard treatments for gout can't be taken with Aza they considered replacing Aza with MMF. However, this also has skin risks so in the end only solves one problem. As I am also a renal transplant patient I take other immunosupressants anyway, i.e. Tacrolimus. They upped the Tacrolimus dose and also added in Hydroxychloriquine (although this seems unusual but fairly low risk).

The issue is I have now become ANCA positive again after many years (maybe 25). They say the level are extremely low (22-32). I'm hoping the Tacrolimus works to keep the ANCA levels low.

Hope that's all clear.

Rod

[metalback]

Hi Rod-J

I'm also on Aza with MPA, but i've been reduced to 50mg for last 2 years. diagnosed for 5 1/2 years. They say this is the minimum to control symptoms also on pred 2 1/2 mg again this is the minimum. they did have to raise the pred when I had septacaema and gall bladder removed in Feb. I think it is down to monitoring and individual responses to treatment.

[Tigs]

Hello. I'm new here, as of today. My mum has been diagnosed with Microscopic Polyangiitis and has been is hospital for 4 months now - ITU twice, various high dependency units, renal units and now pancreas unit. Long long story and many mess ups that led to renal failure, (numbers are finally coming back up), pneumonia, a massive, life threatening bleed due to an artery being hit during a routine kidney biopsy etc, etc, etc. Mum was put on cyclophosphamide and steroids months back, but is being taken off both due to pancreatitis flare ups (due to cyclo they say), and is being put on AZA in the next few days as a last resort, as Rituimab can't be used either. She is feeling slightly better re the vasc', but the complications due to the med' regimes and mess ups have been awful. SO - my question is - how are you all getting on with AZA ? I see some of you have been on this drug for years, what should we expect as far as any side effects are concerned, if any ? I've researched, but hearing first hand info from experienced people would mean so much more to us. This disease is devastating for all who are involved - so many dangerous drugs used to treat it - so little known by GP's which meant that mum spent 3 years ill till she was almost dead before being taken over by Harper, at Liverpool Royal. Does mum need to be any more careful of infection than she already is ? Sorry for the waffle. Healing thoughts to all. Tigs.

[Rod-J]

Hi Tigs, sorry to hear about your mum. In the short term, (and it must depend on weight too) I found that 75mg+ per day of Aza made my hear thin a little, (but nothing like Cyclophosphamide). However, much longer term the risk seems to be UV light generated skin cancer and viral warts that may also cause skin cancer. Of course it is an immunosuppressant and so infections are more likely too. However, Aza kept away the MPA for 20+ years. Now, in my case, being taken off Aza but still on other immunosuppressants for my kidney transplant, I'm waiting to see what happens next. Its important to wear good sunblock for sure and check skin regularly for warts/verrucas so they can be removed.

Hope that helps,

Rod