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Polymyalgia Rheumatica and Steroid Side Eeffects: New Findings.

Posted , 7 users are following.

lodgerUK_NE
lodgerUK_NE

Put the whole of the above in your search engine or if you cannot find it, send me a PM and I will send you the link.

Everyone should read this paper especially newly diagnosed patients. It might help to take some of the fear away from suddenly being prescribed with prednisolone, which is essential.

This research paper (issued 18 August) by Practical Pain Management and the research was led by Eric L Matteson MD,MPH and Don L Goldenburg MD. 

Would be interested in your comments.

 

1 like, 15 replies

15 Replies

  • EileenH
    EileenH lodgerUK_NE

    Posted

    The link is in the pinned resources thread:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    It is about 1/2 to 2/3 of the way down - ahead of Clinical Trials.

    Should be required reading for all doctors with PMR patients! 

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      I posted our link to the website on another thread,  guess what, it has been sent for moderation.........grr.

      So I thought better to try the other way.  Did not know it had been pinned.

      Required reading, I am thinking about email it out to an old list I have from the days prior to the Launch.

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, I just forwarded this article to my Rheumatologist, and mentioned that I would not be willing to take Xeljanz for PMR and/or Palindromic Rheumatism.  I am doing alright with the current dosage of prednisone and plaquenil.

      I am thankful to you and this informative website!!

  • BettyE
    BettyE lodgerUK_NE

    Posted

    There have been many on here and elsewhere to whom this would give the confidence to challenge both their GP and Consultant. Have copied the link to my health folder to have it handy for future ref.
  • Bethune
    Bethune lodgerUK_NE

    Posted

    Thanks for the article information.  My personal experience is different.  First of all PMR generally causes more muscle pain than joint pain, and that is my experience.  For me, my bones went from osteopenia to significant osteoporosis on the meds, and I became prediabetic, never before a problem for me or anyone in my extended family . I am average-thin, and extremely active.

    I count on my prednisone and am grateful for it, but sadly I am experiencing the long term internal side effects.  Ironically,  I never gained weight, got puffy, or odd fat deposits, or emotionally effected in any way, all listed as common side effects. 

    I'm going to try DSBS method of reducing my pred. as all my previous efforts have eventually failed. 

    • EileenH
      EileenH Bethune

      Posted

      I think PMR DOES cause more muscle than joint pain - and I have no idea why doctors think we get joint pain rather than muscle pain. 
    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      My theory is they do not realise we have muscles with ache and pain.

      They do not know that the theory is that it is the oxygen supply that is impaired to those muscles.

      They also do not use the Vitamin D test for deficiency as you well know, which causes aches and pains just like PMR, which is why it is an exclusion test.   Until NICE (which has a new name) eventually gets around to approving those BSR Guidelines down to primary care.....it is left to patients who have learned to try and educate mules.

      OK , OK that is unfair so I will change it to body 'Car Mechanics'  and I must admit not all should be given that name.   Mine even looked at the DVD and as it is a 'GP  training practice, they get to see it as well.   Best thing I ever did giving them a copy.

      As others speak at student sessions in training,, they get offered one as well, free of charge. Slowly slowly but one day..........................

    • lodgerUK_NE
      lodgerUK_NE

      Posted

      Oh, I hit the wrong button and posted - just as I was going to cut out everything from 'mules to name'.

      As re-reading it I realised that was totally unfair of me............but as an excuse, I have just had a run in with a hospital appt for an 87 year old with dementia and that was on my mind and I was angry.

      Sorry.

       

    • BettyE
      BettyE lodgerUK_NE

      Posted

      I love the line in The History Boys; pass it on, boys, pass it on. The forums (a ?) are tailor made to do just that. If it falls on deaf ears we just have to keep trying.
    • lodgerUK_NE
      lodgerUK_NE BettyE

      Posted

      BettyE

      The forums are tailored for us, yes the other two are........THEY HAVE EDIT BUTTONS.

      This one is  as stubborn as hell...............but I guess it is a 'younger' generation in charge and we all know they know better..................

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      There's a sort of suit healthy young people who are studying things like care of the sick, etc., can wear for a while.  It makes the wearer understand better what it's like to be in an aging or unwell body.  I think it should be compulsory for every youthful worker to try at least once, including tech wizards.  It may include glasses which make vision a bit dimmer and fuzzier; if it doesn't it should!

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      I just googled it.  It's an old age simulation suit and it includes dimmed vision and impaired hearing....  In fact reading how restricted one is in it I suddenly feel really youthful!

    • lodgerUK_NE
      lodgerUK_NE Anhaga

      Posted

      When I get a spare minute, I am going to 'google' it and see how much they cost and have it delivered to 'you know wherefrown I am.

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