@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!