How long have people stayed on Azathioprine for.

[deniseann]

Just curious as I go to my WG consult next week.,we are going to be making decisions about my medication ,treatment etc .

[LynneJ Vasculitis UK Volunteer]

I saw my consultant last week and as I had been on it for 2 years I asked if I should be reducing my dose (15Omg per day).

The reason being that my blood is not quite right but she said she is not worried about my blood test and said I should be on it for at least 5 years as she said the last thing we want is a flare.

I have to say though that I have been lucky so far and have been off prednisolone for a year without a flare.

So I am happy to go with her.

Hope it goes well with your consultant. My last meeting was very good as I felt I understood a lot more about the condition since I have joined this discussion group.

[deniseann in reply to LynneJ]

Thanks,Hattie

I think that was what I was told last time I asked .I know it wont be just yet as Im still trying to get over major flare I had at Christmas.

Had got down to 5mg after a long slow journey .Only to start from 60mg preds again but made it down to 15mgs this week. !!

they are thinking I might have to stay on 10mg for awhile.

Thanks again

[Haggiss]

I've been on Azathioprine since 2009 150mg per day. My consultant says she wants me on it until I have 3 years free of flare ups. I had a flare up Dec 2010. I've been off prednisolone for about 2 years as well. I'm seeing her again on Thursday so i'll asked the question again.

Thanks

[vivdunstan Volunteer]

I've been on Azathioprine since spring 1998, so 14 years and counting. For a long time I was on 100mg Azathioprine combined with 2.5mg of steroids on alternative days. But my cerebral vasculitis relapsed in May 2004 and we've been struggling to control it adequately since.

[deniseann]

Thanks again everyone .I will let you know what he says at my next appointment .

[KathyW]

Ive been on Aza since 1999 varying doses up and down trying to control the flares without resorting to high Prednisolone doses again. Aza now down to 150mg and Pred on maintenance of 1mg. Bloods kept a close eye on but not bad so far, flares very mild now and only when I push myself too hard so Im happy to stay on current doses. I think you are ok on Aza long term so long as the medics check the bloods very regularly. Good luck

[nannie]

I've been on Aza for 9 years. I'm currently on 200 mg Aza and 10mg preds. I'm due to come off Aza and have rituximab. My preds will go up to 20mg. I'm dreading this as I already look like the michelin man!. I seemed to be okay but had fairly regular flares.

[AndrewT]

Dear deniseann,

Ive been on Aza. for about fifteen years now, I'm also on Pred.. I think you may be asking 'Is it safe for long term use?'. Well, my experience, is probably yes especially if the alternative is dying of vasculitis!!!

Let me (us) know hpw you get on please.

Best wishes

AndrewT

[deniseann in reply to AndrewT]

Thank you Andrew.will let you know after my appointment on Thuesday .

[laidbackreader]

I've been on 100mg of Aza since 2004. The only time I came off it (2 years ago) I had a flare. Consultant has now concluded it needs to be a 'permanent' fixture in my life. Seems ok as long as bloods are checked regularly. Talk to your consultant about any worries/concerns you have. I'm fortunate enough to have an excellent, well-informed and approachable rheumatologist.......it makes all the difference. Good luck with you appointment.

[AndrewT]

I'm glad that you are being 'checked' regularly. I am also, bloods are done monthly for dialysis patents. Hope all goes well for you.

Best wishes

AndrewT