Do I really have PMR?

One year ago my hip and shoulder pain with leg weakness and inflammatory markers were diagnosed as PMR and prednisone was begun and inched up without serious improvement. By late spring my doctor tried the big hit of prednisone =65mg and still no improvement. The rule of thumb is in that situation to look for something else. Found spinal stenosis L3-L4 with spondylolisthesis and anterolisthesis (sp?) I was referred to Neurosurgeon and had a second opinion. Followed up with spinal fusion and a cage wrapped around the vertebrae. Now I am suffering mostly from the last two mg of prednisone tapering. I had no trouble dropping from 65 to 5 mg but the last few have had severe side effects of joint and muscle pain, lethargy/exhaustion.

Certainly possible you have something else.
In my case the inflammation markers were high then back to normal range after a few weeks of prednisone. How about the other symptoms like morning soreness and stiffness? Fatigue ?
I know symptoms can continue with normal inflammation markers. Quite a puzzle.

I thought that PMR responded well to prednisone (P). The fact that johannab did not respond to prednisone (P) makes me wonder if you do have PMR. As part of my history, about 35 years ago I had pain in my shoulder girdle and hip girdle for no reason and fatigue. When I went to the Rheumatologist (R) I apparently gave him a textbook defination of PMR. He Rx 10 mg P daily and within 6 hours I was a new man. No pain or fatigue. When the blood work was run I had normal SED rate and normal CRP. Now the problems begin. After a year the symptoms returned. I went on 10 mg of P and everything was fine and I reduced my P to 0. But then a year later PMR returned. This went on for 25 years. Then I went on 2.5 mg a day and was good for about 4-5 years. After 5 years I started to get pain again and 5 years later, now, I am on 5 mg of P with good results. During these 35 years I have seen 4 Rs. The first one then 20 years later the second one who thought I was doing so well that anything else he could give me would not be as helpful or have more side effects. The third R after the longest physical exam I have every had (1.6 hours, hard to believe) said "I do not think you have PMR, but I do not know what you have." The 4th R thought initally that I had something else since my original symptoms started at age 40 and most PMR is after 50.
He ran more test which were negative for what I think he thought was sarcodosis. So now I am on 5 mp of P daily, with a bone scan yearly to see if I get osteoporosis. My recent bone scan was normal or above normal probably due to the extensive amount of exercise I do.

Wow! What a journey. You have something to teach all of us.

Excellent writing from fannarbor. Thank you.
I can't add much to this, but can identify.
I have a similar saga. Getting down to 5mg P I was reassured by Reumy that i was definately not immunocompromised. Yet, in this recent plague and after 5 covid vax, flu vax and 2 pneumonia vax I was hit by a horrible version 3 week session of 'a' pneumonia said the hospital.
(Home covid test said positive)
Strange times we live in.

Is it covid or the vaccine or both that may have pushed our immune system into overdrive? Before I had PMR I had 2 AstraZeneca covid shots, then 1 Pfizer booster shot, a few months later I caught covid, was very unwell, all those vaccines did not stop me getting covid, then awful pain suddenly started and I was diagnosed with PMR.

What does PMR stand for?

Polymyalgia Rheumatica (PMR) -- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

I’ve been in the same situation, clinical picture is textbook PMR but my inflammatory markers (ESR, CRP) have not been elevated.
Up to about 20% of PMR cases don’t have elevated markers so TB e ACR guidelines indicate clinical symptoms and response to prednisone are better diagnostically. However they should do other labs to rule out things like rheumatoid arthritis, Lyme, and other autoimmune conditions. But all along, even with negative tests and shoulder X-rays that showed nothing, my doctors remain skeptical on the diagnosis—which none of them formally acknowledged. It’s more of a self-diagnosis, based on my training and education (doctorate in pharmacology with a focus in my 30-year career in immunology).
I have tapered the prednisone at this point but still have some fairly minor pain (mostly at rest). Still trying to discern triggers. While prednisone worked well I did have several side effects and believe they are temporary….weight gain, insomnia, mental hyperactivity, cholesterol and blood sugars way off….everyone is different though.
I’m otherwise a healthy active 65-year old.
Hope your journey with PMR is short and treatment is successful.

No one knows for sure if they have PMR. There is no lab test to "prove" PMR. If you have the correct type of pain in the correct places and you respond to prednisone then PMR is "confirmed". If your inflammatory markers are elevated, then that supports the Dx but lack of elevated inflammatory markers does not preclude a PMR Dx. Everyone treated for PMR is really never sure that is what they have. My understanding is if more than 20mg of prednisone is needed to cover the pain, then PMR is questionable. In practice I have no idea how this guideline is honored.