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New to this site and looking for some information

Posted , 11 users are following.

teresasmith
teresasmith

Hi all

I've just recently been diagnosed with pmr and I'm only 45. I'm sick and tired of being in pain. I don t know anything of this condition so looking for some helpful information as poss. I also have pernicious annemia and high blood pressure.

0 likes, 9 replies

9 Replies

  • Daniel1143
    Daniel1143 teresasmith

    Posted

    Best thing to do is join other threads and just read. Enormous wealth of information on this site from those who really know.  Not the doctors; not the Rheumy's. It's people with PMR sharing their stories, their frustrations and their understanding of this mysterious disease. 

  • denisep911
    denisep911 teresasmith

    Posted

    Hi Teresa I'm new as well but I've found out more about this disease in th last 10 days

    Just keep up your research and keep involved

    We're all in this together ??

  • jeanne333
    jeanne333 teresasmith

    Posted

    I've found out, that any question you asked on this site, will be answered by someone, either with advice or a pep talk on how to live with PMR. Learning how to accept your limitations is the hardest part, but accept you must; you have to learn to read your body and not overdo. AND it is VERY IMPORTANT to do a SLOW TAPER with your steroid mg; don't let your doctor rush it, a fast taper will just set you back. Depending on your pain, stiffness and fatigue, a drop of 1mg or .05mg every month or 2 months, is the recommendation.

  • constance.de
    constance.de teresasmith

    Posted

    Apart from reading as many posts on this site as you can, look up The Spoons Theory by Christine Miserando (Google it)!  She actually wrote it for people with Lupus but her advice is unbelievable and helps people with PMR just as well.  She understands pain and advises how you can explain this beastly illness to other people.

    The people on here are always here to listen/advise/commiserate.  Keep asking questions and also - keep your pecker up!  We all understand.

    Regards from Constance.   💐

  • EileenH
    EileenH teresasmith

    Posted

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

    If you follow this link you will find a post with links to a wide variety of sites and sources of info about PMR. As the others say, also read a load of other threads to find things that have already been discussed widely. You will find the list of all threads eer started by following this link:

    https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

    Then, ask specific questions and someone will provide answers or advice.

    Once you are on a starting dose of prednisone/prednisolone you should find much of the pain improves, the stiffness certainly will. You will need to stay at the starting dose (usually 15-20mg) for about 6 weeks until the symptoms have improved as much as they are going to and then you should start to reduce very slowly to find the lowest dose that gives you the same result as that starting dose did. You may not be totally free from pain - that is perfectly normal, but it should be at least 70% better. 

    And don't make the mistake of trying to catch up with everything you couldn't do - that will just leave you feeling awful and thinking the pred isn't working. Your muscles are still intolerant of acute exercise and will remain so for some considerable time. You will be able to do more eventually but you will have to build up slowly to do more.

  • dea13
    dea13 teresasmith

    Posted

    Hi, Sorry to hear you have PMR : I have had it afor about 3 months now, and am on 40 mg of Pred a day, it does help with the pain, and hope to start weening down soon to a lower dose. It took me at least 2 months to come to terms that I was not going to shake this in a few weeks, the more information you can read on it the better. Now I have come to terms that it's a life change illness and can be for a few years or more, I am coping a lot better, mind and body. This site has helped me a lot, Eileen and the people on here are very good with helping by explaining their own symptoms etc, without pushing. We all have different reactions to the medication, always good to hear what others have so it can help us also.

    I wish you well.

    Cheers Dea

    • Daniel1143
      Daniel1143 dea13

      Posted

      40 mg?  Do you also have GCA? Or some other condition? If not, that's a huge starting dose and it will be a very long taper from there. Virtually every doctor starts treatment at 15-20 mg max.

    • dea13
      dea13 Daniel1143

      Posted

      Hi, yes I also had shown symptoms of GCA, starte din 20 and then they put me up : I am dreading the taper .. I am to give blood again next week to see where my levels are, but the last 2 days have not been good. Been on the 40mg for 3 half weeks. I am hoping to start to taper, we will see. Thanks 
  • LayneTX
    LayneTX teresasmith

    Posted

    Bless your heart. 45. Goodness, I was 53.

    things I've learned up to today, I'd almost rather have the pain.

    At your young age, I'd say really, really research. Really, really focus on meditation and research the body/mind connection. 

    The predisone has really done a number on my body. I can't wait to get off. 

    Been 1 yr 8 mths. I down to 2 mg. 

    i just learned...and NOT from doctors...been diagnosed with osteoporosis which prednisone and thyroid synthetic meds can cause or contribute to, and possibly now showing signs of Osteonecrosis which Pred can cause, which no one talked about, especially doctors. 

    I'm working on healing my stomach due to Pred. 

    My skin is like I'm 80. 

    I know about the pain, I've been in pain every day, and yes the Predisone helped that, made me feel 50-70% better, but ugh...

    i was always healthy before, but mentally I let things stress me big time, now...I'm a very happy person and I'm healing! smile 

    Best of luck and hope for good information to come your way.

     

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