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The good and bad of Prednisone for PMR
Polymyalgia Rheumatica (PMR) | Last Active: Jul 23, 2022 | Replies (32)Comment receiving replies
I’m leaving this group because I am the person who did not respond to 65 mg of prednisone. At that point one is seen as refractive and non-responsive. A good doctor started hunting for the real source of my PMR type pain and discomfort. Answer: Lumbar Spinal stenosis between L4 L5. I will have spinal fusion in the Fall. This was my first experience with a medical interest group. My impression is that PMR has low to no real evidence based medical research. The Rheumies don’t do research OR even read the research that has been done. Is this because our cohort is over 70 and mostly female???
There is way too much finger pointing at a proximate cause. The door slammed and I got a flare. Therefore door slamming is causal for flares. PMR sufferers are not being served well by the scattered and unscientific approach all the different doctors take. This is American Medicine at its worst.
Replies to "I’m leaving this group because I am the person who did not respond to 65 mg..."
@johannab, I'm happy to hear they finally got to the bottom of what was causing your PMR pain. I don't think it's that it's American medicine at it's worst but rather a lot of different conditions that have the same or similar symptoms of PMR. It is like @jabrown0407 mentioned, part of the diagnostic if PMR is suspected is administering prednisone. I also think this is why we have to be our own advocate and learn as much as we can about our symptoms and conditions.
-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
Hoping all goes well with your spinal fusion in the Fall.
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@johannab First I wish you well with your surgery and recovery. I indeed hope you fully recover and go on to live a pain free future. During my journey with PMR I learned that there are cases where administering steroids is diagnostic, meaning if you do not respond as expected then you don't have PMR. This sounds like you. You were very fortunate that you have a doctor who took an interest and did the research.
Secondly, I could not agree with you more about the lack of medical knowledge around the PMR symptoms and treatment. Currently there are no medical PMR trials going on. I'm not able to find a single double-blind study on PMR at the National Institute of Health. Personally, I believe all this points to Big Pharma not seeing a potential profit if they devote research dollars to PMR. Medical research is not lead by doctors but by Big Pharma financing, they are the ones who decide what research gets funded. It is a sad, sad reality.
Lastly, whatever PMR is, it causes pain, interrupts lives and families as well as limits quality of life. Doctors are simply humans like the rest of us and blaming them for not solving a problem that has been around for decades and is not funded to study is not helping get us where we need to be. Doctors drive me crazy but I need them more than not. I'm sure they would say the same about their patients. In the end it was a doctor who helped you.