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I'm at a loss as to what I should do.

Posted , 14 users are following.

deb88821
deb88821

Was diagnosed with pmr a year ago by my family doctor, was put on 15mg prednisone and my entire life changed, the pain was gone and my quality of life restored. Was sent to a rheumatologist to confirm diagnosis and was

Told there was nothing wrong with me and to discontinue prednisone. My

gp agreed to keep me on it.Here's the problem, my gp now wants me to

taper down to 5mg. About the same time as the pmr diagnosis I also started having problems with my eyes, blurred and double vision, this condition

has gotten quite badand I'm really struggling with my vision. I have been

checked out by eye specialist and mri and told nothing is wrong. I'm at the end of my rope and just don't know what to do. The tapering of the prednisone is not going well as the pain is all coming back again, and I just can't

keep going through this. I feel like the doctors don't believe me and have no where to turn. I know that I can not go back to living a life of existence

only. Is there any one out there that can help me?

1 like, 50 replies

50 Replies

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  • gillian_25383
    gillian_25383 deb88821

    Posted

    Has your GP checked you for GCA?
    • gillian_25383
      gillian_25383 deb88821

      Posted

      Giant cell arteretis is fairly common problem with PMR. It is basically an effect on temporal arteries causing sight problems and terrible headaches. Can be confirmed by a biopsy of the temporal artery and needs a higher dose of prednisolone than PMR to prevent vision loss.If this sounds like you would definitely go back to GP
  • pam7653
    pam7653 deb88821

    Posted

    Get a new RA doctor, and have a test for GCA. Many RA doctors are unfamiliar with PMR. This forum is of great help but an accurate diagnosis is important. If it is, slow tapering is the key.

    • deb88821
      deb88821 pam7653

      Posted

      My sex rate was higher than normal but not high enough to receive the diagnosis.
    • deb88821
      deb88821

      Posted

      Sorry about that, the sed rate

    • gillian_25383
      gillian_25383 deb88821

      Posted

      See you have trouble with predictive text like me;think you meant sed rate
    • gillian_25383
      gillian_25383 deb88821

      Posted

      Do not worry.Made me smile thinking of how they could measure sex rate-laughter is good at reducing pain level.
    • faye______00403
      faye______00403 deb88821

      Posted

      You got my attention.....What????  ONly talking about

      sed rate........oh well

    • margaret22251
      margaret22251 deb88821

      Posted

      wish my sex rate was higher than normal since taken pred its nil. lol
    • pauline36422
      pauline36422 margaret22251

      Posted

      so funny  how   stuff like that makes us laugh.  shows where  not  too misserable  ( spelt wrong) even with pmr
  • Anhaga
    Anhaga deb88821

    Posted

    Giant Cell Arteritis is a disease that seems to be related to Polymyalgia Rheumatica, and it can cause sudden vision loss.  Others on the forum are more knowledgeable and will give you more information, but advice I have seen given to people with similar problems to yours is to hie you to an emergency department as GCA is treated with the same urgency as a stroke.  Unfortunately it seems that treatment with prednisone makes subsequent diagnosis of GCA more difficult as many of the indicators are in remission from treatment for PMR.  As your vision problems are somewhat chronic you may be all right to wait, but I would definitely seek some better response from medical people.
    • deb88821
      deb88821 Anhaga

      Posted

      Thank you for your advise. I'm feel so hesitate to seek further midical help due to there lack of interest and feeling like I'm not being believed, but I do appreciate your advice.
    • Anhaga
      Anhaga deb88821

      Posted

      If you look up the symptoms of CGA on the internet you will see that they match your problems, so I would suggest you print off the info and take that to your doctor - your GP sounds pretty reasonable - and ask.  It's your body, your eyes, your life.  The doctors are there to help you maintain or regain your health.  Good Luck!
    • margaret22251
      margaret22251 deb88821

      Posted

      when i was haveing exteme temple pain i went to the A and E and they were really good, hasd tyo look up PMR but did all the right test and said i did the right thing in going, i have been back twice and my doctor also agreed that i did the right thing as we cannot play around with our sight.
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