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

Adrenal insufficiency is a potential problem for anyone on steroids longer than 2 weeks. Please read up on the effects on prednisone on your cortisol release and adrenal glands to better understand what is going on.
Also, cortisol testing is unreliable while you are on prednisone per my endo, so it is difficult to determine for sure what is going on. You should not have a problem with adrenal insufficiency until you are below 7mg - I don't hit problems until around 3mg.
My Rheumy went by how I felt and not the numbers. I am tapering now and I am using both how I fell and the numbers. There is no perfect, fool proof, single approach.

@remargulies Have you asked your doctor about injections? My first treatment for that horrible, crippling pain was an injection. Then came the pills. For me this worked really well. I am completely cured now. None of that pain. Wishing you well. Hope you find your cure.

@jabrown0407 INTERESTING. I wonder if that is why my trearment was so exreme but brief? The doctor who treated me was a real expert on pain meds. (I had one injection in my wrist, and about 2 weeks of pills.)

@tatiana987 do tell, what was your injection?

@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.

The one thing I wish I had known about PMR is that this is real, debilitating auto immune disease. The prednisone is, for all intents and purposes, just a pain reliever with an impossibly long list of side effects and it's own chemical indused health risks and not a cure. Talk to and with your rheumatologist. Share your concerns and observations with them so they can learn from us and help others. Do your own reasearch. Listen to your body. Be kind to yourself. We will get through this. And thank you, Mayo Clinic for this community of support. Good thoughts to everyone on this journey ✨️

@jabrown0407 Who knows whether I was diagnosed correctly. Whatever I had is gone. Thank goodness.

@tweetypie13 I believe the injection was Prednisone. That was what the follow-on pills were. The injection was into my wrist, was quite painful, and the injection site swelled up a lot. The doctor said and I recall because it was memorable, « I have never done that before. » I thought that meant that he had accidentally injected directly into a nerve.

@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.

@jabrown0407
100% agree, our adrenals react differently to prednisone tapering. Some have it easier than others. 5mg prednisone is considered insignificant for everything but our cortisol levels. Paying attention to how our body reacts to each taper is just as important as listening to our doctor.