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@e441300
I had exactly the same experience, doctor could not believe I had PMR 9 years ago because I was only 49, and CPR wasn’t sky high. I had a lot of stress and was also perimenopausal. Took 15mg of prednisone, symptoms gone.
Now after 10 years PMR hit me again and this time luckily it was diagnosed on a PET scan.
I experience like you that the severe back pain I had before PMR is now gone with the prednisone, unfortunately I realize it will come back when tapering down.
I think doctors should learn they have to listen more to their patients because we know best what is happening with our bodies. Not always follow what is written in the medical data.
Replies to "@e441300 I had exactly the same experience, doctor could not believe I had PMR 9 years..."
@ndep I agree with you. Gone are the days of blindly listening to our doctors. We must be collaborators, by educating ourselves and practicing good communication skills.
Being very new to PMR, the one thing I have learned, it’s not a one size fits all disease. I do fit the standard profile of being older, 65, Northern European descent, elevated ESR/CRP, but my worst pain is hips and knees. I have pain in my shoulders but nothing like in my legs. I don’t hear many people mention knees with this diagnosis. I’ve always had healthy knees, but now have difficulty squatting or kneeling on them. They are my greatest source of pain next to my hips. I’m on a 20 mg taper. So far my symptoms are vastly improved but nothing like the miraculous disappearance I hear from others. However, I will take it. Keep leading the charge!
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@ndep
I agree. We must be proactive with regards to our health. I have read about so many people in this forum who have either been misdiagnosed or undiagnosed and, consequently, have suffered for years with PMR because they rely on doctors who are not educated sufficiently about PMR. My rheumatologist now understands that we have to go by my symptoms rather than my lab results in treating my PMR. Btw, when you relapsed, how were your symptoms? Were they as painful/severe as the first time or not? And how long did it take you to taper off completely from prednisone the first time? Thank you so much for your input and I sincerely hope we all get better soon.