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Frustration with Rheumie an understatement!

Posted , 9 users are following.

linda17563
linda17563

Had a visit yesterday to my rheumy who wants me quickly off Pred, because he came to the conclusion a bout 6 months ago, maybe I don`t have and never had PMR!....He caused me great pain when he "trialled" me dropping 5mg every week...to see how I would respond.  His next move was to start  me again at 15mg (which I did 5 years ago) I am down to 9.5mg, which is far slower than he wants me to drop..(Img every week he wants) 

?Yesterday though it was a registrar standing in for him, my long standing friend who is very frustrated at my situation insisted on coming with me....well I`m glad she did, just to hear her comments!...."You can`t have PMR, because when you drop 1 mg every month you would not experience pain.......my patients all come off pred at 1mg every month with no pain!"....I felt frustrated, worthless and felt like crying....I have heard this from my usual rheumie before....my friend then said, well if you have misdiagnosed my friend, what does she have then!.....she said I`ll examine her.....she did, and said, you have pain in lower back, legs and shoulders, this is not typical of PMR!.......ignoring the fatigue......so what do I do then....( I explained that I have to drop very slowly, or I get a flare up and it`s counterproductive otherwise) she said drop .5mg every month, and take Amyltryptiline (wrong spelling) for pain......with Paracetamol, and I`ll see you again, to which I replied perhaps 6 months (no point otherwise) no, she said 3 months.....well, my doctor has said in the past to do it my way.......I don`t think I will bother to go in November, what ever is the point!

?My friends and my flabber was really gasted!!

?Sorry to make this so long, I welcome any thoughts and direction, as I feel almost like fraud for having so much pain, and not knowing what to do about it!sad

0 likes, 35 replies

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  • erika59785
    erika59785 linda17563

    Posted

    Hi Linda, it is sad that it has to be a struggle to deal with a non-caring or not knowledgeable rheumy.  I have one, and my GP is referring me to a different one for a second opinion. 2 1/2 years into PMR and still on 9 mg of prednisone. The current rheumy wants me to quit asap because she is not convinced that I have PMR --- just arthritis!  Good grief - I KNOW  PMR pain because prednisone is the only drug which helps and gives me quality of life.
    • EileenH
      EileenH erika59785

      Posted

      And 5% of us have refractory PMR and it lasts much much longer....
    • linda17563
      linda17563 erika59785

      Posted

      I told the rheumy it was PMR pain, she said, no it`s not when you "only" drop 1mg each month and get pain....so I said what is it then....she just looked at me, my friend who came with me said, I think she wanted to say.......old age!....I got PMR at 60, I`m nearly 66......didn`t feel good coming out of there in any way....I don`t drink, but it was enough to drive me to it!rolleyes

    • linda17563
      linda17563 erika59785

      Posted

      My friend who came with me thinks the stand-in rheumy more or less thought my pain was old age!......I got PMR at 60, nearly 66 now.....well.......like you the pred does help most of my pain, when I said 15 mg made me feel really well, her reply to me was....it would anyone!
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