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Are there any American rheumies interested in PMR?

Posted , 14 users are following.

noninoni
noninoni

       Here I have this common, painful, debilitating, treatable disease and I can't find rheumies in Michigan interested in it.  I looked up  the rheumatology faculty research and interests at the Univ. of Mich. and all I found was lupus, RA and scleroderma. I did find some rheumies that were more promising at the Mayo Clinic in Minnesota, although GCA was more interesting to them than PMR.  Still, that was a closer interest.   I wish I could fly to Scotland or Bristol!!..but my medical insurance wouldn't pay for the consult even if I paid for the flight.  Probably couldn't get the prescription filled here anyway.  So I am thinking I should call the Mayo Clinic.  Any other ideas?

    

3 likes, 35 replies

35 Replies

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  • Danrower
    Danrower noninoni

    Posted

    Sorry for the angry tone of my immediatly preceeding post. I share the frustration of low level of PMR awareness here in US. Additionally, when I saw an ortho   about a torn calf muscle, and mentioned I had PMR, he asked with a quizzical look " when you say PMR, what are you referring to?"  When I said Polymyalgia Rheumatica, he did not acknowledge that he knew what it was. I think he thought to himself " hypochondria myalgia." Fortunately my calf tear and hematoma was greatly improved by the time I saw him, needing no treatment.
  • tina-uk_cwall
    tina-uk_cwall noninoni

    Posted

    Hi noninoni, I have actually read the Mayo clinics webpage on PMR and I agree with erika, in that it may be worth contacting them especially if your insurance covers it. I am so lucky in that I have a very good GP and rheumatologist who both look after me very well. I live in England. I do get very upset when I read stories of patients suffering when all it takes is a little pill and diligence from a clinician, which after all is why they chose to be Drs in the first place. All the best, christina 
  • Guest
    Guest noninoni

    Posted

    My Rheumatologist in Richmond, VA trained at Wayne State U in Detroit, MI. He had many patients with GCA and PMR as a resident. Info from Mayo is good as is NIH and John's Hopkins. We in US so appreciate this forum since we have nothing! It is a bit nuts for us as patients to have to inform our specialists about our illness. Hope you soon find good help and feel better, Ann11295
  • paula63201
    paula63201 noninoni

    Posted

    I am in Northern Virginia. My Rheumy did her Fellowhip at Yale University. PMR is one of her areas of expertise. She lists the conditions she treats on her website and also provides links to Arthritis Foundation and NIH as places to find out about the condition. They might direct you to a rheumy in Michigan. 
  • MrsO-UK_Surrey
    MrsO-UK_Surrey noninoni

    Posted

    noninoni, I'm aware of a rheumatology professor at the University of Pennsylvania who is an internationally recognized expert in diseases under the vasculitis umbrella, of which GCA is definitely one and PMR is also believed to come under vasculitis.  There are also various research trials on Polymyalgia in the US, either underway or completed.  Have a look at niams nih gov Health Info Polymyalgia.   Won't post the proper link as it will disappear for moderating. 
  • MaggiGrace
    MaggiGrace noninoni

    Posted

    The rheumy I saw pretty much diagnosed me with "highly suspect this is PMR" after examining me on my first visit.  

    At my insistence, she waited to put me on Pred till she ran blood work and even then, not until I was absolutely certain nothing else would help.  She's been terrific to work with and is in Vancouver, Washington (WA the state and just over the bridge from Portland OR

    • Mrs.Mac-Canada
      Mrs.Mac-Canada MaggiGrace

      Posted

      Hi MaggiGrace,

      I hope Erika reads this post because she is in Vancouver WA as well and I bet would love to contact you.  I'm from Pitt Meadows just outside of Vancouver, BC and we've talked about getting together.

      What a great place this is to find fellow  PMRer's all over the world.  Just love it.

      Hugs, Diana🌸

    • MaggiGrace
      MaggiGrace erika59785

      Posted

      We could meet for coffee (?) I'm out of town until after Memorial Day.  

      Do do you have a favorite coffee shop either downtown or around the mall area?

    • erika59785
      erika59785 MaggiGrace

      Posted

      Hi Maggi, I live right downtown (Main Street and 4th Plain) in one of the townhouses by Starbuck.  We could meet there sometime after Memorial Day.  Please, let me know when it is convenient.

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey erika59785

      Posted

      Who knows, that one coffee morning may lead to the US's very first PMR/GCA support group.  Have a lovely time when the 3 of you get-together.
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