Azathioprine

[studiomaster1]

I started Azathioprine about 5 months ago to help me reduce my Pred dose. I started on 50mg and then up to 100mg daily. At the time I was unable to get below 12.5 mg of pred without serious flare ups. Since taking the Azothioprine I have managed to get down to 8mg of pred with just a slight issue straight after each 1mg drop. I would be interested to know how other people have got on if they have taken this route. I'm guessing it will get more dificult as I lower the pred dose. Thanks in advance for any replies. Regards Brian

[PMRpro Ambassador]

It is very unusual to find people using azathioprine - there may be someone though

[studiomaster1 in reply to PMRpro]

I guessed that, as there is very little mention of it on the forum. I think this may be because it is not generally well tolerated. Personally i've had no issues with it at all. Hopefully others who use it will see the post and let me know their experiences with it. Thanks for replying.

[PMRpro Ambassador in reply to studiomaster1]

I'm not sure it has ever been looked at in a study - but I think the guidelines aren't enthusiastic about it.

[studiomaster1 in reply to PMRpro]

That's a bit worrying. I was warned that it may have serious side effects, and in the early days I had to have weekly blood tests due to this. So far no problems as far as i am aware but I may have to do a little more research now. Thanks again

[piglette]

A double blind study was done a while back with azathioprine. It was pretty small and the results seemed to say that there was some improvement after 52 weeks with azathioprine. The main reason against the azathioprine seem to be the oncogenic effects and suppression of bone marrow.

[PMRpro Ambassador in reply to piglette]

Thanks piglette - have you got a reference? Oops - found it, hardly overwhleming is it!!! 7 out of 16 patients on azathiorpine discontinued due to adverse effects!

ncbi.nlm.nih.gov/pmc/articl...

[piglette in reply to PMRpro]

Sounds like bad news re the drop outs!

[PMRpro Ambassador in reply to piglette]

Don't find it particularly encouraging to try aza. Even after 11 years of pred ...

[studiomaster1 in reply to piglette]

Thanks Piglette,

Doesn't sound good at all. I'm due another blood test next week so ill see how that goes. They are now only bi-monthly but a lot can happen in 2 months. I think I might be speaking to my rheumatologist sooner than i thought.

[PMRpro Ambassador in reply to studiomaster1]

I think they think we believe them implicitly. I want the evidence before I try something out - and to know the potential downsides. They are terrified of pred - but offer some strange alternatives. All drugs have adverse effects - but ...

[jinasc in reply to PMRpro]

Male mate with GCA and PMR diagnosed about 13 years ago, was given Lleufludomide, Cyclosporin and then tried Aza....................disaster each time.

That is why I have always said, 'No' to any steroid sparing agent. Very, very personal decision - but as we know everything about pred, it is one of the oldest drugs, as you know and taught me to look.

[Griggser]

Made me very ill. Flu like symptoms, shivering violently but burning hot etc. Doctor didn’t think it would be a reaction to Azathioprine and suggested I try agin. Big mistake and I was very ill again. I’m now posted as allergic to it.

[studiomaster1 in reply to Griggser]

Hi Griggser,

Sorry to hear it didn't work for you. I guess only time will tel what effect it has opn me but so far so good.

[Theziggy]

My Rheumy prescribed it for me, gave me breathing issues and heart flutters so I came off it PDQ - though of course it works for a lot of people!

[Cally55]

I have been on azathioprine for about 18 months. Initially I was on 100 mg which helped me get down from 12 ish to 8mg. A couple of months ago I saw a neurologist about an ongoing pain behind and above my right eye and she suggested an increase to max dose for weight which is 150mg, which is about the maximum. This enabled me to get to 7.5 after an excursion to 10 for a few days. I am now struggling with tapering to 7, after a couple if weeks alternating 7.5 and 7 I think I'm getting stiffer!

As to side effects I haven't noticed much, I think that if I go out in the sun without sun cream the itchy bits of skin get sorer but that might have nothing to do with azathioprine.

Methotrexate and leflunomide gave me dreadful side effects and I'm no t eligible for Actemra as I have diverticulitis. I already have osteoporosis but have not had any more fractures recently.

I have GCA and PMR sice February 2016.

[PMRpro Ambassador in reply to Cally55]

rheumatology.org.au/patient...

Sun sensitivity is listed as one of the more common adverse effects - Factor 50 and a hat (though that IS in an Australian data sheet!).

[Cally55 in reply to PMRpro]

I try to do that. Pred head often intervenes!

[studiomaster1 in reply to PMRpro]

Thank you PMRpro Thats very helpful information. I did recently ask my gp to look at a couple of brown marks on my skin that I didn't have before. She did tell me what they were called but I can't remember what she said and she was confident that its not skin cancer. I hope she's right.

Bythe way does it have to be an Australian hat with the corks attached if I go out in the sun. Appologies to any of our Australian members who I may just have stereotyped.

Not sure I can find one in the midlands.

Thanks again

[PMRpro Ambassador in reply to studiomaster1]

DIY!!!

[studiomaster1 in reply to Cally55]

Hi Cally 55,

I only have PMR and countless spinal problems but it sounds like we are on the same sort of medication path. I've not had any side effects yet but again only time will tell.

Thank you for your reply.

[tangocharlie]

One rheumy tried me on it when I couldn't get below 5 Pred, I've no idea why as it isn't indicated for PMR in any guidelines. Possibly she thought I had something else going on that eg arthritis that might respond to it. Also rheumatologists are always keen to try DMARDs as they are paranoid about using steroids. Anyway, I was abruptly taken off it after 2 weeks when I mentioned I had totally lost my appetite so that must have been a warning of some kind I guess? Sorry I don't think that really helps answer your question. Maybe 12.5 is the right dose of Pred for you right now?

[PMRpro Ambassador in reply to tangocharlie]

And it does sound as if 5mg is YOUR dose ... Like 12mg seems to be mine - been on that more than any other dose!!!

[studiomaster1 in reply to tangocharlie]

Hi Tangocharlie,

Not sure if the reply was to me or not but I've managed to get down to 8mg pred using the Azathioprine (100mg daily) I would be quite happy to losses some of my appitite as i've put on more weight since going on the Azothioprine. It was bad enough just on the steroids. I asked my rheumy to help with the weight loss by helping me to reduce the steroids but the overall effect hasn't yet been as hoped. I need more willpower.

[PMRpro Ambassador in reply to studiomaster1]

Interesting that - I gained weight on methotrexate. That doesn't usually happen - nor with aza. Hmmm ...

[tangocharlie in reply to studiomaster1]

The key to weight loss on Pred, for many people anyway, is to cut the carbs. If you search old posts you will find lots of info on low carb diet. Don't see it as a diet, just a change of things you eat.

[tangocharlie]

I didn't get a chance to lose weight, I just totally lost my appetite. I had to force myself to eat as I just wasn't hungry, even though I was still on the Pred too. When I told the rheumy nurse she immediately told me to stop taking the Aza. Very odd

[Christie22]

I appreciate your post is a few months old . I was on azathioprine for a year no side effects was prescribed by rheumatologist for auto immune non descript diagnosis ! I came off this in March fear of covid . Then about 6-8 weeks ago I started to have significant issues upper arm , shoulders , hips , right arm can’t raise pain in muscle shooting pain can’t move the neck or shoulder . So unwell worse in the morning stiff could hardly move , finally in tears persuaded the doctor to consider PMR . 15 mg started a week ago 65 % improvement feel so much better can move without sudden shooting pain causing me to shout out . Now I am wondering if the azathioprine may have been keeping everything in check !

My CRP wasn’t raised but I was on meloxicam and ibuprofen for breakthrough so probably kept the CRP inflammation down . I’d be interested to know if your still taking azathioprine . The year I took it was a very traumatic year for me my son died from three years of leukaemia I think the azathioprine protected me somewhat .

I’d be interested in thoughts ..thanks for reading

[studiomaster in reply to Christie22]

HI christie22,

Thanks for the reply. I am still taking the Azothioprine 100mg daily. The idea was to help me reduce the steroids to a lower level. However I haven't yet been able to get below 7.5. It has helped (and like you I have no side effects at all) but not as much as I was hoping for. I will give it more time. Unfortunately I have gained even more weight but am working very hard at solving that problem. I'm really sorry to hear of your loss and you are probably right it did protect you as it gave you one less problem to worry about at such a traumatic time. I have been on Steroids for over 2 years and was hoping to be at a lower level by now but as the more experienced users on here will tell you we are all different and have own level that works for us. Due to my GP having very limited knowledge of PMR I was left on 30mg for almost a year, without reduction so I guess it will be a very slow proccess to get down to a lower level. At the start of my treatment all of my markers were raised but are now at normal levels so I gues that is progress. Thanks again for replying to my question. I don't tend to post very often but I read the posts all the time. The fellow sufferers on this page have no idea how much they have helped me and I thank them all. Take care

[PMRpro Ambassador in reply to studiomaster]

It is usually said that methotrexate and azathioprine lead to weight LOSS. I took methotrexate for a month - and gained 2lbs, I was always hungry. It was as if the mtx increased the side effects of pred - I couldn't stick it long enough to find out if it also increased the antiinflammatory effect!!