Do I really have PMR?

According to the Mayo Clinic you can have normal markers and still have the disease. This is supported in every scientific journal across the world. Your doctor should know this.

Hi, I had horrible pain and stiffness in my whole body from the neck down for four months, with slightly elevated inflammatory markers that my Primary Care Physician did not follow up on. That horrible pain receded after 9 months, but I developed other troubling symptoms. Long story short, one year after the onset of the first symptoms, I was diagnosed with Giant Cell Arteritis, the companion disorder of PMR. My sed rate was 120. If there is a dramatic clinical response to symptoms of PMR, within 1-3 days after steroid institution, even without the inflammatory markers, it supports the diagnosis. (Cecil and Goldman's Textbook of Medicine). The symptoms are indicators of these disorders, sometimes more than the lab test results. Prednisone took away 98% of my pain, but I have osteoarthritis in the right shoulder, which is still painful and for which I am getting physical therapy.

PMR has no exact tests to diagnose it. Doctors go by symptoms and usually inflammatory markers are raised. But even that doesn’t prove you have PMR.
Read up on the prednisone. It doesn’t do much of anything for my pain, but it sure causes side effects! Doctors just love putting patients on prednisone and walking away. Seems easy. Meanwhile, what happening to your body? Only you can care.
Be careful.
And remember- Doctors “practice,” they don’t KNOW much, especially about PMR!

This tells the true story of PMR and blood test results. I've found this to be the case in my own PMR experience, Doctors should be made to listen or find another doctor that will listen. Its crazy logic to deny a patient PMR pain relief just because the doctor is more concerned about the side effects of long term Pred use. Leaving a patient in pain is surely going to make that patient take more drastic measures to get out of that pain. Doctors are sometimes our worst enemies. My GP is a real diamond. By working together, I'm down at 1.5 mgs from 50mgs 14 months ago. Rheumatologists are the worst offenders.

It's absolutely important to pay attention to your own body. We all react differently, and the "guidelines" used by rheumatologists are just that, guidelines. In my case I have found that tapering by 1 mg was too much for me always causing a flare. I now taper by .5 mg and it is working for me. My rheumatologist has accepted my plan.

Thank you, John. I am definitely planning to talk to the doctor about the fact that studies have been done, and have found, that it is possible (although rare) to have normal inflammatory markers with PMR. I will also share how my appointment goes.
I do have another question though - in your experience with prednisone, did it completely take away pain from everywhere in your body? Is it supposed to do that? As I said above, I feel much better with less pain for sure, especially in my hips, thighs and lower back but my right shoulder still hurts. Do some areas of pain just take longer for the prednisone to work? Thank you

Prednisone does NOT necessarily remove all pain for all people. Many people enjoy being on it because it does alleviate some or all pain. ( it does not help me with pain at all, but drops very negative side effects) I’m off of it now completely. The side effects are gone ( thank God), but the CRP and Sed rate are super high again, somewhat explaining the pain.? I’m not sure where/what to do now. But any joy there was in my life left in April, 2022, with the coming of PMR( thank you Pfizer and Moderna)