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PMR or not?

Posted , 4 users are following.

peggyG193
peggyG193

My PCP diagnosed me with PMR in April of 2019 after 4 months of increasing pain - started in the shoulders, neck, then hips, and then knees. Worse after no activity. Tylenol and Aleve only helped mildly. After tests to rule out Lyme and other things, my PCP said I had PMR and I started on 20 mg of prednisone and felt much better within 5 days. Over time, I tapered the dose to 12.5 mg/day which kept me feeling good. In Dec of 2019, I started to get headaches, and since I hadn't had a headache in 9 years, I became concerned that I might have GCA. I started seeing a rheumatologist who put me on 60 mg of prednisone in case I did have GCA. The headaches went away, but I felt like my head was going to explode at that high dose. I've been decreasing prednisone slowly over the last several months and am now at 3 mg. At 7 mg, the pain in my shoulders returned. I now have pain in my shoulder, hips, and knees just like I did at the beginning. I have a hard time getting dressed and can't sleep due to the pain. Before all this, I was a very active 59 year old woman who worked out 90 minutes every day, including boot camp, yoga, walking 10k steps/day, etc.

My rheumatologist doesn't think I have PMR because my sed rate is low (has never been higher than 38 and is currently 7) and 95% of her PMR patients went off prednisone within 1 year and were fine. She sent me for xrays and to see an orthopedic doctor. The ortho said no issues with the xray and suggested I see a musculoskeletal doctor for myofascial release therapy. That doctor is scheduling out in March.

I'm at a loss. Do I have PMR or not? Any suggestions on next steps? Thank you all in advance.

0 likes, 4 replies

4 Replies

  • Anhaga
    Anhaga peggyG193

    Posted

    If 95% of her PMR patients were off pred in one year and were fine then she has a unique practice. Nearly everyone will take no less than two years and many take longer, I've been on pred for over five years,, although the last four have been mostly at 2 mg. I have tried to taper to zero but the symptoms come back. I bet her patients tapered off as she told them to, then they went away to find a better doctor which is why she didn't see them again.

    You may have better luck with responses from the HealthUnlocked forum as this one has become very quiet over the past year or so due to user unfriendly technical changes. Although it's improved most people are no longer posting here. 😦

    • peggyG193
      peggyG193 Anhaga

      Posted

      Thank you Anhaga for your reply. I just subscribed to HealthUnlocked.

  • EileenH
    EileenH peggyG193

    Posted

    95% of HER PMR patients may have been off pred in a year - maybe! A study from the Mayo in Rochester - who of all people probably have forgotten more about PMR than most ever learn - found only 1 in 5 (20%) are off pred in a year, by two years it is 1 in 3.

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    https://www.medpagetoday.org/rheumatology/generalrheumatology/66912

    You should probably have stopped at 7.5mg - you are never reducing relentlessly to zero but looking for the lowest dose that works as well as the starting dose did.

    I'm on HU too - PMRpro. See you there

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