Hi,
been with PMR for about 6 years and have been down to 2mg pred for the last few months and zero for last 6 weeks. About a year ago I had a synacthen test which showed my adrenals were functioning okay. Still have symptoms of PMR and wondered if there's a cast iron way that will show it's finally gone and maybe my pains are old fogey pains. Know this sounds simplistic but would be helpful.
Thx
Tony
Not really - although if it is still PMR those niggly pains would be likely to increase rather than stay the same (old fogey) or improve (improving reliability of adrenal function which is said to take some time even after stopping pred altogether). The synacthen test didn't show your adrenals WERE functioning normally, just that they are CAPABLE of doing so - there are lots of other factors besides the c/h boiler being plugged in to the power socket to produce heat!
I've already said on another thread this morning that it is not uncommon for people to be fine at as low a dose as 1mg or even less but zero is a step too far. The only way to know that PMR is gone is to be able to do well on zero pred - and be honest.
I have a friend who got off pred but 6 months later she reluctantly admitted it wasn't entirely gone. She was about to go on the holiday of a lifetime that had been postponed because of PMR so she was willingly to take pred rather than postpone it again. Well under 2 years later she IS off pred.
The only cast iron way to know is to be off Pred for nearer 6 months rather than 6 weeks with no PMR pains.
Trouble is old fogey pains which were previously masked by even a low dose of Pred - now aren’t! ...not always easy to differentiate. 😳
Yes. I think that's exactly my problem! Too many old fogey pains.
Paddy
Can anyone say for themselves or know anyone where it has completely gone? 
PMR gone into remission says consultant
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