You are so right about some rheumatologists not being as informed as one would hope. I waited for 2 months to get to a rheumatologist who treated PRM, and on the first visit when I told her of my diagnosis and my swollen right hand, loss of use of the hand, she said “that’s not PMR—it doesn’t affect hands.” I almost cried!!—never went back. My primary care doc & I are a team. I finally got the PMR diagnosis in 2019 after several months of excruciating pain, loss of mobility, tests & more tests (MRI, Cat scans, colonoscopy, sonogram, visit to my oncologist, blood work). Started on 20mg pred—a miracle—have regained mobility lingering pain in left shoulder & bicep, swelling in left foot ankle—massaging helps, along with keeping active.—Trying to taper down, am alternating days: new dose/old dose for 4 weeks, then lower dose by 1/2 mg at a time— now at 10.5mg, so far, so good! Tried to taper once before, went too fast, had to increase pred, going much slower this time, listening to my body. This site is the BEST!—a treasure!—so happy to have met you all—thank you!

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