Length of PMR condition

hi. I just passed 7 years a few days ago. I am 78 now. I do have osteoarthritis. hands feet knees shoulders but can function just fine. I Do adult tap and Heel drops. 50 a day and my bones have improved since initial prednisone caused damage..into osteoporosis.. now getting almost back to osteopenia. I take no other drugs. have good blood pressure, no diabetes, in range BMI, and good cholesterol (was high for 20 years but did not take statins. started doing ice baths )crazy I know) but cholesterol is normal now. I am on 2mg of prednisone. cannot get lower have tried and tried. lasted 2 months on 1.5 and finally gave up...too much pain and I believe that the exercise I did NOT do during that time. was more damaging than the 2 mg of prednisone while Doing exercise. (tap, 1x week, walk 3 miles a day, yoga 2x a week and light hand weights) My primary doc has been great. finally sent me to rheumy who was dismissive and said PMR only lasts 1 year and to get off prednisone that was when I dropped to 1.5 for 2 months in pain the whole time. ! good luck to us all!!!!

I achieved remission as measured by SED and CRP testing in three months after initial diagnosis. At that point I had tapered from a high of 30 to 10 of prednisone.
My rheumy informed me that we were no longer treating PMR, that I could expect various non-PMR pains to occur, and that the task at hand was to slowly taper off prednisone without provoking adrenal insufficiency or crisis.
I tapered from 10 to 5 at 1 per month, then at 0.5 per month, now at 2. During this period I have occasionally experienced periods of cramps and pain in my arches, lower legs, wrists, rotator cuffs, and fingers. As my adrenals have (apparently) restarted production of cortisol, these pain episodes have stopped. Mild osteoarthritis was diagnosed during the taper in my wrists with xray.
Until your adrenals resume (hopefully) cortisol production, conditions such as osteoarthritis which had previously been kept under control by normal adrenal cortisol production can be expected to cause pain.
All pain is not PMR pain, and therefore should not be treated with prednisone.
It is complicated, and there is not one template that fits everyone. Hopefully we all have docs that are cognizant of this variety of possibilities, and are willing to consider changes based on your testing and symptoms. Again, all pain is not PMR pain.
Good luck.

Hi Im just curious SED and CRP rates were when you went into remission? I started having pain in September 2024 and was diagnosed in December. My rheumatologist started me at 4 mg of prednisone which immediately took my pain away. I never had to go higher than 4 mg. I have just recently started to taper slowly and I’m down to between 2 and 3 mg switching off every couple days. Next week I will start on 2 mg and stay that way for a week or so before I taper down further. I go tomorrow for bloodwork and I’m hoping that my rates show So far, (fingers crossed) I remain pain free. I’ve read so many stories on here where people have started so much higher on their prednisone dosage. It makes me really question if PMR was the correct diagnosis for me. I totally 100% trust my rheumatologist, he’s amazing. But I still wonder being my story is not similar to anyone else else’s if this was my actual diagnosis.