Anyone on Azathioprine for PMR

[reefswimmer]

Recently my consultant has suggested that I reduce my steroids and start on this drug at the same time. I am currently on 6mgs of Prednisolone and my pain, which is mostly in my hands and wrists is manageable.

For 5years I did not have to take anything at all and I really would rather just taper off the steroids as I did before and avoid the activities that cause a flare up in symptoms....in my case flower arranging with fake flowers......thick wires to cut through etc.

I looked at the side effects of Azathioprine and there are lots, including susceptibility to skin cancer and I like holidays in tropical destinations and swimming in the sea, (so not ideal).

I am currently taking 6mgs of steroids per day (Prednisolone) and will reduce to 5 next month. My hands still hurt and sometimes I feel lacking in energy but I still manage to swim for an hour and a half (figure of eight in the pool so non stop) once a week and do about 130,000 steps every week. I have a treadmill in the garage and walk a lot outside. I am retired so I have the time!

I take a lot of supplements and the high dose of steroids I started out on this time, caused my hair to thin alarmingly. I had hair loss from steroids before so I take hair supplements and I have a laser device for hair growth so my hair is not too bad. However this time I have had hair extensions as my hair was looking very thin on the ends.

So is anyone on this drug and if so, are they pain free and what are the side effects? My consultant is great, but it seems everything you take to cure one issue, can and often does cause another.

[PMRpro Ambassador]

It is unlikely to replace pred - it isn't even one of the DMARDs that has a record of use in PMR - as only pred really works in PMR.

If it were me. I would be very unwilling to introduce a drug that really doesn't have much of a record as a steroid sparer - particularly since you have managed to get to 6mg on your own and are doing pretty well from the sound of things.

Sometimes their fear of steroids, even at low doses, really seems to cloud their judgement of what is useful or sensible.

[reefswimmer in reply to PMRpro]

Thank you so much for your reply. I apparently do have osteoarthritis as well as PMR and some days I do feel tired all day but, I just don't want to take more drugs with more side effects. Steroids are bad for you long term and according to my GP my bones are so bad I will undoubtedly sustain a fracture. But I am 71years old and despite falling five times in the last 10years, I have not broken any bones. My specialist says my bones are obviously much stronger than they appear on X-rays. I think the exercise really helps and so although I can't say I enjoy walking on the treadmill, I believe it does me good. I watch movies, documentaries and dramas on an old laptop and that keeps me going.

I think I will just continue to reduce my steroids monthly and see if I can get off them again and if I do, make sure I don't do anything with my hands that could start it up again. I will post again in a couple of months with my progress. I have a holiday in Rhodes coming up in September, so I m hoping some hot dry weather will help.

Thanks once again for your reply. Much appreciated.

[PMRpro Ambassador in reply to reefswimmer]

I have been on steroids for 15 years - they gave me my life back. Without them I would have been in a wheelchair long ago - if I hadn't topped myself instead! Too many doctors don't appreciate the disability that comes with inadequately managed PMR.

Low bone density does not necessarily equate to bones that crumble. They need to look beyond their prejudices.

And PS - azathioprine does nothing for osteoarthritis either.

[piglette]

I have come to the conclusion that some doctors seem to think that drugs used for Rheumatoid Arthritis are fine for PMR too and don’t seem to understand the difference. To a certain extent drug usage is similar, but there does seem to be a general lack of understanding on their part. Backs up my theory that a large number of doctors know very little about drugs.

[reefswimmer in reply to piglette]

I do have osteoporosis arthritis as well but normal pain killers that would be prescribed for that have no effect on the pain in my wrists and hands and the general aching that you get from PMR. I agree with you that a lot of GPs do have very limited understanding of drugs and their effects. My GP recently phoned to say that they want me to go on statins, but I have friends who have suffered with awful side effects from them and I have decided not to take them until my PMR has gone away again and even then I may not bother. Steroids have given me higher blood pressure but that is controlled to normal levels with Ramipril and my cholesterol is 5.4, with my 'good cholesterol' being described by a doctor as 'amazing'! I think a good diet and exercise can go a long way to keeping a person healthy without lots of different drugs.

A couple of glasses of wine in the evening can also be very helpful if you have a bad day!

PMR can be so debilitating and steroids have an almost magical effect on the pain. They do have their downsides, on bones, hair, blood pressure, sleep etc, but surely the aim should be for all of us, to get off medications as much as possible. Thank you so much for replying. Maybe later in the week someone will reply who has been put on Azathioprine instead of steroids and has found it helpful. I will post again with my progress in a few months.

[Janet57]

I took Azathioprine for over nine months, it was introduced as a steroid sparing drug but I’m afraid it did nothing and certainly didn’t help me to reduce the prednisolone I was taking. There were some side effects but nothing too awful. However, it was agreed with the rheumatologist that it wasn’t helping me so the treatment was stopped. I’ve not heard of anyone on this form for whom Azathioprine has helped reduce Pred with PMR .

[Gimme]

I just don't get some of these rheumatologists. They get their knickers in such a twist about prednisolone and yet they seem happy to hand out cytotoxics like sweets. It doesn't make sense when prednisolone does work on PMR and DMARDs for PMR are questionable.

[Geordieland]

hi ! I’m on 5mgs of pred reduced from 2mgs in 2019 I’ve tried Methotrexate, Sulfasalazine , Leflunamide and had adverse reactions to all 🫣 I was recently put on azathioprine and it made me violently sick 😳 ! I’m now sticking to my 5mg maintenance dose of pred and will see the rheumatologist in February . I’ve also got osteoarthritis , osteoporosis and rheumatoid arthritis as well as PMR and sometimes my joints, feet , hands are really painful but I would rather take painkillers than any of the so called “ steroid sparing “ drugs but that’s just my experience - I know others will have had success 👍 Good luck

[PMRpro Ambassador in reply to Geordieland]

It is a bit different if you also have a diagnosis of RA because those drugs have a different role there. They are called DMARDs, Disease Modifying AntiRheumatic Drugs, and as the name suggests, they have an effect on the disease process in inflammatory arthritis so that there is less structural damage to they joints and as a result a lot less disability in the long term. If you can't tolerate the traditional DMARDs, there are now highly effective biologics available.

[Geordieland in reply to PMRpro]

Hi ☺️ Will wait with bated breath to see if I’m offered any of those then 🤞 Thanks for the info PMRpro 👍

[reefswimmer in reply to Geordieland]

Thank you for your reply. I first got a diagnosis of PMR in my early fifties and it took six ears to get off steroids, BUT for the last couple of years I was only taking 3 or 2mgs per day. No side effects that I noticed. My hair had stopped falling out years before and I was pain free. Then PMR came back in 2020 I had to buy steroids off the internet and it took a year to once again be pain free. I was mostly taking 7mgs or less a day, just tapering down all the time.

This year it all flared up again after my flower arranging and this time, I had to take 20mgs per pay to be pain free.

Now on 6mgs per day, my hands hurt in the morning, but by the afternoon, I am fine.

I think maybe now it might be mostly arthritis, but even strong pain killers, that would have helped for arthritis, didn't help in January.

My first consultant told me that if you can get below 7mgs per day, you should not suffer from side effects. Nearly 20years later, I am still here and still haven't broken any bones......yet. I hate taking pills and I firmly believe that exercise is the key to keeping going. Sometimes on the treadmill (I walk at at about 3.8 miles per hour, not run), I think I just can't keep going for an hour. But I stop for a few minutes and then start again. It's time consuming and without the lap top and films and dramas, I couldn't do it. But it allows me to live a normal life. The more I sit, the stiffer I get. It's so depressing to be in pain, but all the drugs that I have been offered seem to have so many side effects. I don't have RA, just osteoarthritis. I've had all the tests. So I just hope that the PMR will go away agin and I will just suffer the same arthritic pain my grandmother did, which I guess is an inevitable part of ageing for lots of us.

Maybe someone will invent a pill that cures PMR WITHOUT side effects

[AtopicGuy]

This article from 2020 suggests there is only weak evidence supporting the use of azathioprine for PMR/GCA:

"While less studied than methotrexate, azathioprine may also be useful. A double-blind randomized controlled trial evaluated the use of azathioprine 150 mg daily as adjunctive therapy. The trial enrolled 31 participants diagnosed with PMR, GCA, or both, taking at least 5 mg of daily oral prednisolone to manage symptoms. At the end of 1 year, the group receiving azathioprine were on a lower dose of prednisolone than the placebo group. However, patients with PMR were not separately analyzed, precluding recommending the routine use of azathioprine based on this study."

ccjm.org/content/87/9/549