I am 68 and have been dealing with PMR diagnosis for going on four years. It started in late 2019 with the usual aches and pains, inability to pick things up, sore neck, shoulders, arms, and back of my thighs. I had no idea what to think, so I went to the ortho doc, thinking maybe pinched nerve? He alertly recognized that it was not a mechanical issue, because his father had PMR and he recognized the symptoms. He sent me back to my GP and advised to run the blood tests and try Prednisone. None of the blood markers for inflammation were evident, however a starting does of 20 mg. of Prednisone had me almost completely out of pain in a matter of days, so the presumption is PMR, or at least an autoimmune condition. I also have had reynaud's for many years, and five years ago starting noticing weird a weird lump at the tip of my left ring finger, which turned out to be a calcium deposit. I had that removed in 2021, but it came back and I had a second surgery on the same finger this year. I have bad arthritis in both thumb joints as well, which they think is just garden variety aging.

Anyway, I proceded a bumpy path down the taper, going off completely once and having to bump back up to 4 mg due to pain. This month I went completely off after a couple months at .5 mg every other day, all the while living with a moderate level of pain that others might not tolerate (just want to be off the "stuff"). I have been off for maybe a week and a half, and it's not going that well, so may have to bite the bullet and go back on something. I am completely fatigued, sleep disrupted, and my brain is a bit foggy. I am active... walk regularly, and on my feet most of the day, coffee drinker, moderate alcohol, decent diet, and have always viewed myself as basically "healthy," so it has been difficult for me to accept that I may not get better. I am interested to read about alternative treatments, but I seem to have no visible side effects from the Prednisone (other than the likely invisible ones like bone loss). I got lined out with a Rheumatologist in Seattle in 2020 as we don't have many specialists where I live, and she has been monitoring my Prednisone, and I go to a Hand clinic there for the calcinosis, but they all seem a bit baffled with me. The hand doctor keeps wanting to suggest Crest syndrome, but all of my blood stuff is normal (except the usual age-related med-high cholesterol and inherited hypertension, both under control with meds). The Rheumatologist reassures me that even 3 mg is nearly a placebo dose, but I am still leery. So I am grateful for this forum and the opportunity to read about other folks' experiences down this very weird road.