I've had PMR 'on and off' for over four years. Flare ups generally due to the usual, coming off pred too quickly. I am now on 1-2mg a day and have been for six months and will probably stick with this. I saw the rheum this week and he asked if I was taking anything for my osteoporosis - I said I had stopped alendrotnic acid after 5 years on a [non monitored by GP !] repeat prescription. when I realised that I was actually suffering from the side effect of the medication, which I'd taken to be part of PMR ! The rheum - who has been helpful now suggests that I should go on to Denosumab injections every six months - I've read the side effects and they sound as horrible as Alendrotnic Acid, but its a bit Catch 22 - I am as young and active at 77 as its possible to be with PMR hovering in the background, but after getting back on my feet again the idea of risking a fractured hip/wrist, whatever, is devastating. My last dexa scan showed that the osteoporosis hadn't advanced since the previous scan.
I don't very often post on here but read all the questions and comments most days, so THANK YOU to you amazing people who come back time and again with so much wisdom and advice!