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AVERAGE LIFE SPAN OF PMR ?????

Posted , 18 users are following.

Flutterbie57
Flutterbie57

In the past, I know the Medical (team) believed that PMR had an expected life span of around 2 years, but I remember someone (probably Eileen) posting on here, in recent times, that most Doctors in the UK now think that around 5 or 6 years is more realistic. I think they posted an article to read. Of course I cannot find that discussion now. The reason I would like to read it again  is because I have a wonderful new Doctor, but she still firmly believes that if anyone is still on Pred after 2 years, then they are just addicted to it. Thoughts ........?

0 likes, 28 replies

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  • doni89057
    doni89057 Flutterbie57

    Posted

    I have read several references to the average duration being 6 years. I am not close to my article collection at the moment. Do they refer to average duration in the Bristol paper?
  • Twopies
    Twopies Flutterbie57

    Posted

    It’s at the beginning of this forum under pmr-Gca addresses and resources post.  The findings are included in that post.  I sent you the link but it’s being moderated.
    • EileenH
      EileenH Twopies

      Posted

      If you give the resources post link it won't be moderated which is why we set it up originally - nor will NHS links and a few other approved sources. Anything else - probably!

  • lynda62707
    lynda62707 Flutterbie57

    Posted

    Addicted??? Why? With all the side effects, I can't wait to get off this stuff! I certainly don't get a "high"! ......confused!!

  • constance.de
    constance.de Flutterbie57

    Posted

    Thoughts........?  Rubbish!  She doesn’t know enough about PMR.  There are many of us who have had PMR for 5+ years (I have had it for 6 1/2 years, so far).  Eileen will be along and give you the links you need.  
  • brian75018
    brian75018 Flutterbie57

    Posted

    HI, my story is that I realised I had PMR say around Xmas 2016 although it maybe started some months before. I started on steroids say Feb of 2017 at 15mg.I got this down to 5mg after say 6 months and by early this year to 1 or 2 mg. Since early August I have done without steroids and it doesn't seem to get any worse - I am say 95% (plus) better than I was when at its worst (before steroids) but it hasn't totally gone away.

    • EileenH
      EileenH brian75018

      Posted

      About 1 in 5 patients gets off pred in under 2 years - and there seems to be a large proportion of men amongst them. PMR in men often seems to be very different for some reason. There is also some thought that there are different version of PMR, i.e. different underlying causes and one sort seems as if it may be reactive - in response to an underlying infection of some sort or as a result of an "insult" such as an accident, surgery or the like.

    • brian75018
      brian75018 EileenH

      Posted

      It is strange how aches and pains move around possibly something to do with pmr, I have had aching hip joints, aching right knee, biceps, hands, neck,shoulders,feet,pelvic region and so on, often at different times as well as concurrent. However the only ache which is always there to soe extent is left shoulder.An osteopath told be initially(before steroids) that this had been injured in some way so I wonder if this was the cause?
    • lynda62707
      lynda62707 brian75018

      Posted

      Hi Brian, you are blessed. Compared to some of the stories I've read on this forum, it seems you've had a relatively "easy go" of things. (Don't get me wrong, I know it's never easy when it's happening to you). Anyway, I hope things continue to go well for you! It's nice to hear of "success" stories! Be well.

    • brian75018
      brian75018 lynda62707

      Posted

      Maybe I am relatively lucky although you can never be sure that it's not all going to come flooding back! I like to say what's happened to me so far though as it is good I think to have experiences 'across the board'.I got the steroids down quickly as I never wanted to take them (and tried all manner of natural alternatives first).This may not work for everyone but seems to have worked for me.

    • lynda62707
      lynda62707 brian75018

      Posted

      I agree! It IS a good thing to get everyone's experiences, both good and.....not so much! I think I'm envious of your journey😏....but good for you! Btw.....if things should all of a sudden go south (fingers crossed), we'll be here 4 ya!

    • andy34717
      andy34717 brian75018

      Posted

      Hi Brian,

      I am intrigued, what natural alternatives did you try and did any of them have any impact?

  • EileenH
    EileenH Flutterbie57

    Posted

    No, not UK doctors (we're still working on them) but a specialist at the Mayo and his mates:

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    are 2 articles about the original paper with slightly different emphases and this is a video from a reputed rheumy about the presentation at the ACR meeting in San Diego:

    http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

    Addicted to pred??? What world do these people live in?

     

    • doni89057
      doni89057 EileenH

      Posted

      Why oh why do I live in the same state as the Mayo clinic where this was done and doctors still appear to be clueless, including rheumatologists??  Sigh....  People (and their doctors) are so desperate to get off of the steroids, which I understand, but perhaps the desperation should be to get to 5mg.  I am on a number of Facebook groups for PMR as well as this list.  It is shocking and upsetting what doses people are on and what their doctors are telling people. It's so important that we all educate and advocate for ourselves. Thanks for being the voice of wisdom in the crowd of insanity, Eileen.

    • Anhaga
      Anhaga doni89057

      Posted

      it is appalling what happens to peopl, whose PMR journey is often made much more difficult than it should be simply because the doctors are clueless.  There's another PMR patient in our extended family (not a blood relation of mine) and recently he went to a drop in clinic where a doctor put his dose up to 60 mg for a few days, then the standard rapid taper back down.  I was horrified.  For a couple of years he has, with a few exceptions because of other health issues, been hovering around the 8 mg level.  When I saw him not long after this episode he had that typical moon face, which I had never noted on him before.  What also horrified me was he just did what the doctor told him to even though he probably knows better.   

    • cindy828
      cindy828 EileenH

      Posted

      Eileen, I must be one of the people that these people are talking about.  I loved prednisone!  I had zero pain and so much energy it was fantastic.  I only had to sleep 4 hours a day and when I was awake I was walking, digging, cleaning, fixing, making . . . you get the idea.  My brain was focused and I thought I could do anything - I no fear of failure.

      While tapering and for a couple months after, I was like a junkie getting off heroin. Seriously, I itched, I felt like I had the flu, I had random strikes of nerve pain like bee stings, I was exhausted, and I couldn't think about anything except how all the misery would go away if I took some prednisone. I have much more compassion for addicts on withdrawal.  My body, not my mind, but my body wanted it's heroin, I mean prednisone. 

    • EileenH
      EileenH cindy828

      Posted

      My GP keeps trying to tell me that pred always makes you feel better! I keep trying to explain - no it doesn't! There's better and better...

    • ptolemy
      ptolemy EileenH

      Posted

      I suppose you could argue it makes you feel better than if you do not take it and have to put up with excruciating pain, but I am not sure if that is what the meant! 
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