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How to address PMR pain while decreasing prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Nov 6, 2023 | Replies (747)Comment receiving replies
Hi. This is my first message on Mayo Clinic Connect, but I've been around for awhile, reading. I need to speak up on this topic of CRP and ESR (Sed Rate) because it can delay proper diagnosis. I encountered this personally and was denied Plaquenil for years despite long term Sjogren's Syndrome -- over forty years.
Somehow, a bunch of rheumatologists got the false idea that it is necessary for patients to demonstrate inflammation by having elevated markers. This is just not so, and has been proven many times. Patient surveys and academic studies show that it "just ain't so." I went through 30 years of paper and electronic medical records of metabolic tests and, no matter what I was going through at the time I have NEVER had an inflammatory marker over the normal range.
Replies to "Hi. This is my first message on Mayo Clinic Connect, but I've been around for awhile,..."
You are so right about the markers, and I am grateful for your comments. My inflammatory markers were, initially, high. After a short period of treatment with prednisone, they dropped into the normal range. After about six months of reduction in dosage, as the dosage decreased, the pain increased. My doctor(s) would not accept that the PMR was still alive and well in my body because the markers did not reflect that. After a year (and four opinions later), I went to the Mayo Clinic in Jacksonville, FL. Within a short period of time, the rheumatologist told me that I was one of the people for whom the markers had no meaning. She increased the prednisone, and the pain went away.
Because of what I experienced, I have often wondered how many patients have an autoimmune disease which is affecting their quality of life, and it is going undiagnosed because some doctors are depending entirely upon elevated markers for inflammation to make their diagnosis.
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Hi @redhen, welcome to Connect. Thanks for sharing you personal experience. It helps when it's coming from someone has been through the testing and diagnosis. My experience was a little different. My Sed Rate was high or rather maybe just elevated for both occurrences of PMR when I was diagnosed. From what I've read you can have the symptoms for awhile before you have elevated numbers from the tests and the tests don't necessarily provide a conclusive diagnosis.
Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment
-- https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
Erythrocyte sedimentation rate and C-reactive protein
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653962/
Are you still on Plaquenil for your Sjogren's Syndrome?