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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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  • LayneTX
    LayneTX deb88821

    Posted

    Deb,

    how long were you on Pred 15 mg?

    i thought Pred can also effect our eyes if on too long at higher doses (don't know), but maybe go to real eye doctor verses just the perscription ones...I forget name and get it confused...

    when end you say "pain", is it a 10 on pain scale like before Pred? Or about a 6-7?  Uncomfortable but not make one fear for their lives type of pain? 

    I learned here some of us are stil feeling about 70% of pain and some have no pain and I know we all have different pain tolerance.

    And my SED rate is back down to 6 verses 80 when I first was diagnosed. 

    • deb88821
      deb88821 LayneTX

      Posted

      Hi Layne, thanks for responding. I have been on prednisone for about 18 months, 15mg. I have been to 2 different eye

      specialist just recently and they found no reason for the blurred and double vision. It has gotten bad enough that I can no longer drive. I'm so frustrated with the doctors, if you don't have

      something

      that jumps out at them they chalk it up as nothing. Before I started on prednisone my pain was a 8or 9 it hurt to move. My life was an existence only.

    • linda17563
      linda17563 deb88821

      Posted

      I do limited driving due to blurred vision, either because of PMR or the steroids themselves...or both.  I have been checked at emergency eye clinic also, nothing wrong...it is very frustrating...but you can only go with it....and it will lessen in time. Often I am housebound becuse of the vision problem...there really isn`t much we can do, if you`ve been checked out.... damn nuiscance....good wishes...
  • pauline36422
    pauline36422 deb88821

    Posted

    deb dont  despair  as you get more used to pmr you can usually. adjust to the pain and pred, its a long  road but just settle down and  dont be panicing.  that doesent help.  you will get there in the end.   i too  get blury vision.   maybe its because i spend too much time on my laptop. if i  rub or blink my eyes  it moves    hope this helps
    • deb88821
      deb88821 pauline36422

      Posted

      Thanks Pauline, my fear is I'm going to lose my vision, and just want reassurance that that isn't going to happen
    • margaret22251
      margaret22251 deb88821

      Posted

      Debs i had this worry at the begining my hubby thought i was mental till he read the little book, so dont feel bad, and please keep in touch, i am still a newbie but could not do without the ladies on this forum for their wealth of knowledge. Mags
    • constance.de
      constance.de pauline36422

      Posted

      I get blurry vision too sometimes and I KNOW it's because I am on and off  my iPad all day.  It has become a drug!!!!😕
    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      My public library won't buy the book because it isn't authoritative.  I have asked for an interlibrary loan instead, and suggested the library try to find something authoritative enough for them to buy, as this disease is obviously not rare, and they have NOTHING on it.  I live in a reasonably large centre so they should fill that gap!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Anhaga

      Posted

      Anhaga, I don't know which book you are referring to but there are two excellent books available, one on Amazon 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Kate Gilbert of our Charity, PMRGCAuk.  It also available direct from PMRGCAuk, with all royalties from sales being donated to the Charity.  The other booklet 'Living with PMR&GCA' is available from the North East Support Group and Charity. 
    • Anhaga
      Anhaga MrsO-UK_Surrey

      Posted

      Thanks.  It was the one by Kate Gilbert that the library would not buy, and which I have put in a request for from our interlibrary loan department instead.  I do not live in the UK.  
    • lodgerUK_NE
      lodgerUK_NE Anhaga

      Posted

      That is OK, the North East post out to the States.
    • margaret22251
      margaret22251 Anhaga

      Posted

      I bought mine from amazon Anhaga and can highly recommend both books, i got some leaflets from the hospital yesterday and they were also good, but yes get the books will help you understand my hubby read it as he did not understand why i was so frightened at first, and boy did he learn from it, nobody better to take to the hospital if i needed too.

      Take care. Mags

    • lodgerUK_NE
      lodgerUK_NE constance.de

      Posted

      No, we said the stock had been reduced very quickly, we still have copies available. 

       

    • margaret22251
      margaret22251 lodgerUK_NE

      Posted

      yes it was, and how helpfull it was, a great idea and everybod should read it.

       

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