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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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  • Judygirl
    Judygirl noninoni

    Posted

    I have been seeing a rheumatologist for two years, began prednisone

    at l5mgs and quickly got down to l0mgs. it is a slow process getting down

    to a lower number, it takes a lot of patience.  There is very little advice,

    the doctor shakes my hand looks at my blood test (which I have before

    seeing him) tells me everything looks good - and that's it.  We have to 

    monitor ourselves because our makeup is so different.  I go down to 3mgs.

    for a day or so but inevitably go back to 4, so it's a very slow process and

    your body will tell you what is needed.   Good Luck to everyone.

  • mr_rush
    mr_rush noninoni

    Posted

    I would see Dr Dinesh Khanna or his wife.  Both are truely amazing rheumatologists.
  • noninoni
    noninoni

    Posted

         Thank you all for your great information!!  I am so happy that a side effect of my post is that some of you can meetup in person in Florida! 

          I just looked more closely at Yale Univ.  Before I had looked specifically for PMR and GCA and did not see anything, but now that I look again there is a big interest in immunology and inflammatory diseases, so that is encouraging. 

           A long long time ago I worked at Yale as a data analyst and got an MPH in biostatistics at the Yale Med School, and I still have friends there on other faculties, so it would give me a great excuse to go visit!!  

        The Mayo clinic looks very promising too, and one can get a flight directly there from here.  It sticks in my mind that one of my grandmothers went there 80 years ago! The Mayo clinic is really setup for out of to town patients in a way Yale is not.  Then again I can get to New Haven by train if the train doesn't fall off the tracks! It sticks in my mind that one of my grandmothers went there 80 years ago!

         If I have to put up with arrogant doctors, at least I want to be sure they actually know something!!!  So I will let you all know which one I go to later!

  • ingo
    ingo noninoni

    Posted

    I live in the Boston area and there are many doctors here that are familiar with PMR.  I am seeing a rheumatologist named Jonathan Kay at UMASS Medical center who is very informed.  I was worried before my first appointment that he might not be as knowledgable as I am from being on this web site and reading all I can on this disease and how to conservatively treat it.  But, he was on the same page as me as to the very gradual taper off prednisone.  
  • noninoni
    noninoni

    Posted

    T hanks ingo, that is another good idea that I will tuck away. I have a reason to go to Boston too.
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