Information

[Sailormo]

Hi all I'm an old member, Haven't posted for along while, I'm trying anew drug Axathioprine I've been taking it for six weeks has anyone else tried this? I have pmr I've had this for 4yrs my Rheumy is trying hard to reduce my steroids and it's been a hard slog since Christmas, when I got down to 10mg to get a pep scan ,I'm up to 20 mg for 2wks it's been very painful and loss of mobility is worrying, I'm just hoping this will help me, any advice would be appreciated.

[SheffieldJane]

Hello! Sorry to see you back. Am I right in thinking that you also have GCA? I am not familiar with the use of Azathioprine in the context of our illnesses. More as a Rheumatoid Arthritis Drug, an immunosuppressant. Did your doctor try Tocilizumab? This is what I and others have been prescribed for GCA. Research has shown positive results for some sufferers. It is a bit of a leap of faith for me because it doesn’t make me feel immediately better like Prednisalone did. It has however helped with my initial tapering from GCA level doses of Prednisalone, so it must be working away in the background.. Looking forward to hearing more from you. I do think I remember you. I have been around here for 6 years, it is a lifeline.

[Sailormo in reply to SheffieldJane]

Thanks for your reply, Imhoping it will work I've been on it six weeks my specialist nurse thinks its early days yet but I'm getting alot of pain in thighs and buttocks mobility poor and mood sad.

[SheffieldJane in reply to Sailormo]

I am so sorry that you feel sad. It often seems to be waiting in the wings for us with these conditions. They can seem hopeless at times. On a good day I can see that it has taught me a lot. It’s the first time in a busy life that I have had time to reflect. At my best I do artistic, creative projects, I have made my surroundings pleasant and relaxing. I also have a renewed love of nature where happiness lives. Trees and birds are a joy. I do know the sadness though. Good luck with this drug! 🌼

[PMRpro Ambassador]

Do you mean azathioprine? It isn't generally thought of as a steroid sparer in PMR but it may work - works in asthma apparently! The only way you find out is to try!

[piglette in reply to PMRpro]

Someone did do a double blind study with a handful of people nearly forty years ago. ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to piglette]

Oh thanks piglette - never seen that one before! Long term committment though isn't it. Suppose it is like the MTX or leflunomide story - you do have to try it. But there hasn't ever been a follow-up to that pilot study - same as with leflunomide until recently.

[piglette in reply to PMRpro]

It doesn’t look as if it were life shattering, but I suppose they tried.

[SheffieldJane in reply to PMRpro]

I think my input was based on Azathioprine .

[York54]

I took azathioprine for a few years but for my ulcerative colitis. It was used as a steroid sparer. I eventually came off steroids and also azathioprine. I had to have 2 weekly blood tests at first then monthly . I was doing fine until PMR came along in 2016. Hope it can help you . X