Hi Sue! So sorry to hear you are having a hard time. Sorry too I haven't replied earlier - but I haven't been on the forum for a few days and new threads don't pop up in the email notifications!
If it is any consolation your last 18 months almost mirrors mine! It started in March with my achilles tendon becoming inflamed (because I was given the wrong antibiotic which interacts with pred) and my back went into total spasm as a result about the end of April. I went into hospital for 2 days to get that sorted - and ended up there for 3 weeks as I reacted to the i.v. valium used for the muscle problems and had tachycardia (fast heart rate) with a pulse of 230 and atrial fibrillation. I came out still on crutches and a with a suitcase of drugs. One was a statin - and within a week I could barely walk at all, 50 yds from the car to the lift in the hospital was it. Even standing was beyond me. I stopped the statin and that improved slowly but noticeably. The next thing was a return of trochanteric bursitis far worse than it had ever been before - and that made rehab after the May problems next to impossible: if I walked more than a few hundred yards I was in agony as opposed to being merely in pain!
I have had PMR altogether for 9 years, the first 5 years not on pred as it wasn't recognised - I was "too young and your bloods are fine". Only when it got really bad in Jan 2009 was I eventually given pred and it wa like a miracle but a couple of years ago I had possible GCA symptoms and was back up to 15mg and, because I had moved here to Italy, had to be switched from prednisolone to methyl prednisolone. Until then I had not put on weight, it had moved to around my waist but it wasn't too bad. With the Medrol I really became cushingoid like you and I had a short period of very high dose medrol whilst in hospital.
Why have I told you all this? Not because I want to say "I was worse than you" but because in August last year my GP switched the form of pred again, to a form called Lodotra which is the only alternative to Medrol here. Since then I have lost 26 lbs in weight, I'm overweight but have a waist back, the fat face and dowagers hump have disappeared and I feel great. I have had cortisone injections for the trochanteric bursitis and also a LOT of sessions with the pain clinic here to deal with the spasmed muscles in my back - and they contributed to the bursitis pain. I now have no pain, can now walk for an hour without being desperate for a rest, after a good rest I can do the same again. Last Christmas I struggled to do 400 yds - this year I'm waiting for the ski season to start! There is light at the end of the tunnel - you really won't always feel like you do now! By last Christmas I was despairing, I didn't feel much better in the spring - now is a whole new ballgame.
You were started on a very high dose for PMR - unless they suspected there might be some GCA going on. It is known that patients started on a high dose do struggle later and that is why a starting dose of 15mg is recommended for PMR. That will have contributed to the weight gain (although it ISN'T inevitable if you are very strict about diet).
I don't get why your rheumy has suggested to you that azathioprine will "get you off the steroids" - it does not and cannot replace the steroids in dealing with the PMR symptoms, at best it will allow a lower dose of steroids to achieve the same effect and, in fact, the top people in the field are now actually saying they have realised it doesn't achieve as much as they originally thought it did. It is possible that the patients for whom methotrexate and azathioprine worked were some of the patients who are wrongly diagnosed as having PMR rather than late onset rheumatoid arthritis which can be very similar in the way it appears.
A drug where they have had some success in patients with other problems that mean they need to get off pred is LEFLUNOMIDE. A trial was done by the Southend group under Dasgupta with 23 patients. One dropped out and 1 didn't respond but the rest went into remission. If I were you I would ask your rheumy about that - I believe there is a larger scale trial underway at present.
I would also ask for cortisone injections for the trochanteric bursitis. I had one lot in July last year and it made a big difference but didn't get rid of it altogether. The second pair of shots in the autumn did after another few weeks. The injections aren't into the joint so DON'T have to be done in hospital. They are done at the point which hurts most to touch - they prod until you tell them where it hurts most. I know the UK is very reticent about dealing with pain and I am very thankful I live where I do - I've had a lot of needles over the last year or so but it has achieved a lot.
Have you visited the PMR forum hosted on forumup? A link is given at the top of this forum in one of the pinned posts. Otherwise there is a link from the PMR and GCA UK Northeast support group site, where you will also find lots of advice and success stories etc (google it). Three or four of us over there have lost a lot of weight over the last year in different ways and we have been talking about it - you might find it interesting and helpful. And 3 or 4 of us have also had terrible bursitis problems - and they have resolved, also possibly helpful to you.
But the 57 feeling 87 - yup, know exactly how you feel! I used to sit and cry.
Eileen