Azathioprine

[Bacardi]

Hi all this is my first post on PMR site . I saw my rum dr 3 weeks ago who confined it was PMR I had , she wants me to start on this drug along side my 5mg of steriods with a few to stopping them and just use this drug , I'm very unsure about this and wondered if anyone else was on them . Thank you .

[HeronNS]

Just curious why your doctor thinks azathioprine is, ultimately, safer for you than prednisone? I don't think anything has been proven to work effectively against PMR pain and inflammation other than glucocorticoids like prednisone. Does 5 mg pred really treat your pain effectively? If so you are really fortunate and already at a low dose many people struggle to reach.

[Bacardi in reply to HeronNS]

Hi Heron , I started on 30 mg last may and have been doing the dead slow reduction . I still have pain in my hips and shoulder blades which I can cope with , that was my first appoint at the hospital . I got a dexa scan in June that showed I had severe osteoporosis of the spine and left hip , 6 weeks after that I woke in extreme pain which I put down to PMR , got sent for X-ray and it turned out I had 3 fractured collapsed disc which I believe the steriods contributated too . That's why she wanted me to stay at 5 mg along with the azathoprine which comes with loads of side effects , that's why I wondered if anyone else was on it . Thank you for your reply .

[PMRpro Ambassador]

Pred is the staple management for PMR. The only DMARD (azathioprine is a DMARD, drugs used for RA) that is recommended for use in PMR is methotrexate (mtx) and even that has little proof that it works. That is from the latest international recommendations for the management of PMR. When DMARDs are used then they are in addition to and never instead of pred - the hope is that they will get a greater effect from the pred so you manage on a lower dose.

The normal starting dose for PMR is 15mg, sometimes more if required. Then you reduce slowly to find the lowest dose that gives the same result as that starting dose. Some doctors add methotrexate from the start, others don't. Azathioprine is very occasionally used but usually when mtx has already been tried and had to be stopped or it made no difference and both of them are only used after a patient has struggled to reduce the dose below 10mg.

Is 5mg of pred doing anything at all? If it is then I'd resist the doctor's suggestion of aza in addition. If 5mg works it is already a VERY low dose that most of us would be delighted to be on after years, never mind to start with! Many people are on 5mg of pred for very long periods with no problems.

I would be asking your doctor for a lot more explanation of why she wants to proceed like this and how many other patients with PMR she has on this regimen and does it work for them? It is an approach I have never some across before - in hundreds of PMR patients on 3 forums over 7 years.

[PMRpro Ambassador in reply to PMRpro]

OK - having read your last post I now understand. That is a very different kettle of fish. But if you only started in May and had the dexascan in June that osteoporosis was nothing to do with the pred - that was already there. Now I can appreciate thinking the pred then contributed to the fractures but I'm not sure what she thinks she will achieve with aza, mtx maybe - although I do know one person who is on aza and it does make a difference for her as she found out when she stopped it for a while. But she is on about 10mg instead of much more and it is GCA she has.

[Bacardi in reply to PMRpro]

Hi I started the steriods in may 2015 I had the dexa scan in June 2016 , so i have been on the steriods 17 months and slowly been reducing since , I also have COPD , under active thyroid , restless legs and my skin condition I have a lot of auto immune condition going on . At the moment it's the pain of the collapsed discs that I'm struggling with . Thank you for your input .

[Runrig01 in reply to PMRpro]

I think pmrpro is referring to me. I have been on Prednisolone for 4yrs, 18 months in I was advised to try Azathioprine. I always said from the outset it helped with the GCA symptoms I was having, although no one would diagnose at the time. I managed to reduce to 3mgs, then had PMR flare followed by GCA flare. I stopped Aza for 13 days and the head symptoms became unbearable, restarted Aza and it settled down again. However I have never noticed it helping my PMR. I have just stopped it 17 days ago, before trying Methotrexate, as my Rheumatologist says I now have Spondylarthropathy overlapping with PMR & GCA. If you are on a low dose Pred I'm not quite sure why your rheumatology is keen to start it. Good luck whatever you decide, Runrig 😃

[Bacardi in reply to Runrig01]

Hi thank you for answering my post . I'm not sure why she decided to put me on this drug , she waited to get a reply from my dermatologist then sent a letter to my GP . My Dermatologist is convinced that long term amytriptilyne use caused my my Lichen Pilanopilaris as they are just discovering what the long term use of some drugs are. I seem to have bad side effects with some medication that I am loath to go on azathioprine when I only have a few aches on 5 mg , to be honest I would like to try and come off them and see if the PMG has maybe burned out , as I am in so much pain with the osteoporosis collapsed disc I'm frightened the steriods are making that worse . I have decided to not start azathioprine till I go back in December to see her . Thanks .

[Bacardi in reply to PMRpro]

Hi I started on 30mg of steriods may 2015 I am now down at 5 mg still have aches in my hip and shoulder but at a level I can live with , I'm not sure why she wanted me on azathioprine but she had discussed it with my dermatologist as I also have lichen pilanopilaris of the scalp and face which the steriods helped too . I'm trying hard to get off the steriods because of the osteoporosis which I am starting infusions for .

[PMRpro Ambassador in reply to Bacardi]

To be honest - I think I might ring the NOS helpline and discuss it with them.

If you are about to have the infusions, and 5mg is a very low dose, it will potentially cause some calcium leaching but not a lot but if it is enough to manage the PMR is there a desperate need to stop it? I do understand - but I think it is something to discuss with osteoporosis experts. If the aza doesn't help, I mean, you can try it and see of course, but if it doesn't - is there any reason to say you must stop the pred? I know people on pred who have osteoporosis and have had Prolia infusions successfully despite still being on pred. If you stop the pred and let the PMR loose then you will be immobile - and that is a major risk factor for osteoporosis.

[Bacardi in reply to PMRpro]

Hi it's Aclasta infusion I am having , I was on aladronic acid tablets but they didn't agree with my hitius hernia so that's why the infusion . My go said he would support me coming off the steriods in the under standing if I had a flare it would be a high dose again. I go back to the hospital in December so will leave a decition on the Azathioprine till then thanks for your help .

[PMRpro Ambassador in reply to Bacardi]

Have they not considered Forteo - it is the only bone medication that actually actively builds bone and I would have thought it was more suitable for someone with existing severe osteoporosis.

[Orchid47 in reply to PMRpro]

I would also recpmmend to you FORTEO injections.

I had Osteoporesis before going on Predisone.

I am finishing the 2 year s treating and the dexa bone sca showed that my Osteoporesis didn t get worse eve so I have been taking daily Predisone for the last 2 years due to PMR and GCA.

Now I have to try lut the Prolia Denosumab half yearly injections.

[Bacardi in reply to Orchid47]

Hi thank you for your input . My rheumatologist has put me forward for the Aclasta infusion because I am 71 and have fractures of the spine and that is the one that's recommend for that age group , so will see how I go on it and review how it goes .

[HeronNS in reply to Bacardi]

If you read up on it, forteo is supposed to actually help lay more bone, whereas the other OP drugs, including aclasta, stop the osteoclasts from removing old bone. It can, however only be taken for a couple of years (during which time I hope you'll have been able to start encouraging healthy bone remodelling the "natural" way). It's up to you to weigh the relative merits and risks of treatment, of course. Good luck!