PMR - What do you wish you had known . . .

@tatiana987 I went to my AI tool and asked it what you possibly did have that was inflammation based in your wrist, very painful, treatable with a steroid injection and short course of oral steroids, as well as being confused with PMR. My AI tool told me about RS3PE (Remitting Seronegative Symmetrical Synovitis with Pitting Edema) which apparently is often a discussed in the same differential Dx as PMR per my AI tool. A differential Dx is a working Dx that helps support a requested test while they are searching for the actual Dx. There is no test that identifies PMR. PMR is a default Dx, meaning that if you fail a bunch of other tests then PMR is Dx by default.
You were treated correctly and you don't have the pain any longer, that is the good news.

@tatiana987 Treating PMR is normally months to years. At high doses of prednisone tapering can be somewhat rapid, below 10mg per day it normally takes weeks to months to titrate down. I personally have never heard of a pain management specialist treating PMR. It is normally in the wheelhouse of a PCP or Rheumy. it is chronic and can return at any time. This is true with all auto-immune problems. Auto-immune problems are not normally pain management candidates, they are inflammation based and many are degenerative. They are your body fighting itself.

@tatiana987 Treating PMR is normally months to years. At high doses of prednisone tapering can be somewhat rapid, below 10mg per day it normally takes weeks to months to titrate down. I personally have never heard of a pain management specialist treating PMR. It is normally in the wheelhouse of a PCP or Rheumy. it is chronic and can return at any time. This is true with all auto-immune problems. Auto-immune problems are not normally pain management candidates, they are inflammation based and many are degenerative. They are your body fighting itself.

I have a question, please.
Diagnosed early January, started Pred in March and have tapered from 30MG. At 2.5MG now since June 5, 2026. A little scared to lower below 2.5, but doc says to trust the SED test. SED test way down, but PMR is NOT gone. My question is that I have worked out, but the pain is intense. I skipped just a single day working out, and pain was gone. Started back and pain returned. Not like the old heavier work outs, but 2LB weights for shoulders and 5LB for bi/triceps. Gently, slowly with a lot of stretching. Maybe 15 min weights, then stretching/core/yoga. For 2 months I just worked out with a theraband, so not crazy. The pain can be eyewatering. OK, the pain cannot come from 2LB weights after consistently working out for months, can it?? PMR causes pain but skipping a workout lowers the pain to almost none. Are muscles just physiologically messed up because of PMR. I still barely have the strength to pull a tighter sports bra up and off. Any thoughts please would be appreciated.

I have a question, please.
Diagnosed early January, started Pred in March and have tapered from 30MG. At 2.5MG now since June 5, 2026. A little scared to lower below 2.5, but doc says to trust the SED test. SED test way down, but PMR is NOT gone. My question is that I have worked out, but the pain is intense. I skipped just a single day working out, and pain was gone. Started back and pain returned. Not like the old heavier work outs, but 2LB weights for shoulders and 5LB for bi/triceps. Gently, slowly with a lot of stretching. Maybe 15 min weights, then stretching/core/yoga. For 2 months I just worked out with a theraband, so not crazy. The pain can be eyewatering. OK, the pain cannot come from 2LB weights after consistently working out for months, can it?? PMR causes pain but skipping a workout lowers the pain to almost none. Are muscles just physiologically messed up because of PMR. I still barely have the strength to pull a tighter sports bra up and off. Any thoughts please would be appreciated.

I wish I had realized that all autoimmune diseases are chronic and that remission is the long-term goal. When I first went to a Rheumy I thought that we could get me well and I would be on my way. Kinda like having a broken arm - a cast, some drugs, some therapy - and now you are as good as new. So wrong with autoimmune diseases. Big difference in setting expectations, goals, communications, etc.

here I go again. finally managed to get an appointment with urgent care after quitting Prednisone about 5 weeks ago .After being on Prednisone for over 5 years my final taper was from 3mg to0. I won't get into the damage Prednisone has done.I am in tremendous pain and am on fire in my muscles. the doctor said that I wasn't' in adrenal insufficiency because my blood pressure was good both standing sitting,and my c reactive protein was only slightly elevated I ask here if there something I could take for the burning in my muscles and she said not really. I guess it means that I will have to put up with the pain

@jabrown0407 The doctor who treated me (African) said my prednisone reaction confirmed the diagnosis. I think he meant the swelling and significant improvement in 4 hours would only happen with PMR. Not too sure of anything here, just happy it worked.

I think perhaps some diagnoses in the USA today are billing code influenced or determined. Maybe even some choices of treatment? Is the prednisone injection more dangerous than the pills?