From may 2017 I was diagnosed with PRM. Sudden onset , pain initially in hips, followed by shoulders/ neck.
As we all know: prednisolone was my miracle drug too! For the first 5 years or so I, mainly, managed along on a low dose, mainly under 5 mg. Gradually the unwanted side effects kicked in: hypertension, osteo-poroses, and increasing pain/ dysfunction/ tiredness plus plus.
We moved from New Zealand to Netherlands and I decided that I needed some specialist help.
I went to the local hospital rheumatology unit and was advised by my oncologist to "get a second opinion". ("that is very common in the Netherlands" he assured me!)
And yes, how correct he was, what a difference!
I saw the rheuma specialist, tests were done, and her verdict was: you probably had PMR at the onset, but now : adrenal insufficiency.
WHAT!! I still don t know whether I can/should believe her, but..she is the expert and I feel so lucky to have her, so I follow her advise. Of course. No more prednisolone. It has been my constant companion for 7 years.
Hydrocortisone, initially high dose, gradually diminishing. We give it our best shot.
Of course I want to know whether any of you good people have, or have had experience with this drug and what I can/ might expect, and of course what I can do to make this work as good as it can.
Thanks for your responses.