PMR flare at a drop from 8 to 7 mg of prednisone?

My initial symptoms of PMR mostly involved my shoulders. I couldn't lift my arms to do anything myself. Someone could lift my arms for me and it wouldn't hurt so much. It started in one arm first because I would carry my bad arm with my good arm. The asymmetry was only for a day or two and it wasn't too long before I couldn't lift either arm.

It took time to be diagnosed with PMR. I had a 20 year history of reactive arthritis so the first assumption was that my shoulder pain was a flare of reactive arthritis even though I never had shoulder pain before this time.

My ophthalmologist prescribed a massive amount of prednisone for every flare of uveitis which is "associated" with reactive arthritis. The problem was --- I would "self medicate" with leftover prednisone prescribed for uveitis anytime I had the pain caused by reactive arthritis. This went on for 20 years until I was 52 years old. I never had a primary care doctor let alone a rheumatologist. I was a nurse so I took care of myself. I listed my ophthalmologist as my primary care doctor.

When PMR set in, my wife called her primary care doctor because she didn't want to help me get dressed anymore and things weren't getting any better. My wife's primary care doctor thought I was an idiot and referred me to a rheumatologist.

A comedy of errors ensued because reactive arthritis isn't treated with prednisone. I was begging any doctor who would listen for prednisone. I was praying for uveitis to happen so my ophthalmogist would prescribe prednisone.

Eventually a couple of rheumatologists agreed that I had PMR in addition to reactive arthritis and uveitis.

A primary care doctor apologized to me after PMR was diagnosed. He said when he first saw me, he thought I was a "crazy person" who wanted prednisone. After my first visit he decided I wasn't crazy ... and he thought it was PMR then but he was listening to my rheumatologist. The rheumatologists were telling him to limit prednisone.

It took a few more months before the rheumatologists to come to the same conclusion about having PMR. I couldn't believe it either. I asked what happened to reactive arthritis. My rheumatologist said it was still there except now I had PMR too.

Well that is all maddening. And yes I guess is it common to have more than one thing going on that makes diagnosis difficult but still.. doc’s need to listen!

"Multiple autoimmune syndrome is a condition in which patients have at least three distinct autoimmune conditions. Multiple autoimmune disorders occur with increased frequency in patients with a previous history of another autoimmune disease."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#:~:text=Multiple%20autoimmune%20syndrome%20is%20a,history%20of%20another%20autoimmune%20disease.
All my doctors helped me and I think they did extremely well under the circumstances. We developed a good relationship over the years after PMR was diagnosed. During the twenty years before PMR was diagnosed, I was flying "under the radar" so nobody knew what was going on.

PMR was a kind of blessing to me because many health care professionals were trying to help me. They were all "specialists" in what they knew. I wish I could meet one doctor that knows everything but I don't think one exists.

Good morning all - @annemarie74 @barracudacool Can you tell me if you would describe the pain/stiffness in your recent flare ups as EXACTLY the way you experienced PMR at the initial onset ?
I am questioning what is going on with me:

I was just beginning to taper from 7 to 6 mg and have had three 3 non-consecutive days of waking up with sore arms /biceps - I have been doing pilates again have kept up with PT exercises in the pool. So i now can't tell if this is PMR related or not !
But i feel the most telltale observation is that i don't WANT to lift my arms up - i can't put my hair in a ponytail ( and believe my husband cannot put my hair in a barrette - it's pretty funny ! )
In addition , i had blood work done in anticipation of needing that data to help figure this out - my CRP and ESR are currently normal.
Given what others have described in this conversation and elsewhere, I will increase my evening dose and revert back to 8mg total for the weekend and get a message out to my Rheumatologist.
SO ANNOYING ! But anyway - speaking of tapering -- I will attach a nice short review tha mentions a "typical" schedule :
" A typical regimen is reduction by 2.5 mg prednisolone every 2–4 weeks, until reaching 10 mg daily, and then by 1 mg per month until cessation or until symptoms flare. Some patients need a slower reduction of 0.5 mg per month. Tapering of glucocorticoid dose should be guided by clinical symptoms, not by inflammatory markers; thus recording relevant patient-reported outcomes12 "