1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Just need to know

Posted , 9 users are following.

Padada
Padada

I am trying to understand why PMR goes away eventually (2 years to ?) when most other autoimmune diseases definately do not - MS, lupus, and scleroderma, for example.  Of course I am glad that there is hope for us that we will be done with it some day, but it seems illogical to me. 

 

0 likes, 7 replies

7 Replies

  • EileenH
    EileenH Padada

    Posted

    It doesn't "go away" any more than any of the others - the autoimmune bit can burn out and you go into remission. But so do many of the others. One form of MS is called relaspsing remitting - it goes into remission every so often, comes back and goes away again without being any worse the next time round. All autoimmune disorders are different.

    As for 2 years - if you are lucky, I've had it for 10 years and it is still there. German textbooks say an average of 5 years.

     

    • erika59785
      erika59785 EileenH

      Posted

      Schade, it does not sound hopeful what German textbooks say.

      It is so sad that even my German relatives do not know what PMR is.  They call it Rheumatism or Rheuma but meaning RA and not understanding the muscle inflammation.

    • EileenH
      EileenH erika59785

      Posted

      I've explained it in the last as RA without joint damage - not taht that means much to most people!
  • Danrower
    Danrower Padada

    Posted

    Had in at 53, untreated, 95% remission in 18 months . Occasional minor reminders, from then on, especially when stressed, In my case hips, wrists, but also had some aches, thought it was over work- workout.

    Then at 64, about a month of gradually increasing symptoms, Wham. Penguin walk, You all know.  I'm 16 months in this time,  managed with pred, leveled at 5 mg, going to resume a slow taper, finally able to work, physically. After 16 months, finally feeling better. Less fatigue, higher spirits. Less depression.

    So my theory is that once demonstrated, then PMR will be, for me, a lifelong condition. Then it may go into remission, but under high mental or physical, trauma or stress, then the it may well show itself. Lurking,eek ready to appear when my unique set of triggers resurrects the monster. I suppose I have had some markers for 12 years.

    I think that I spontanieously recover from the endocrinological storm which caused the symptoms in the first place. And it takes me  about a year and 1/2.

    I have pre-Copernicusly (me being the center of the universe) described my own cycles, and answer this question without any generalization or thought that others experiences will be similar.This is my second recovery. I hope we will have our last recoveries with no recurrences.

    • erika59785
      erika59785 Danrower

      Posted

      I have noticed myself that stress can be one of the worst culrprit for flares and inflammation starting up in odd places like buttock, hips, shoulders.
  • Nancy_O
    Nancy_O Padada

    Posted

    Hi Padada

    I heard from my doctor as well that it burns itself out as well, but I understand that is remission, not cured. I am six weeks into prednisone at 20mg and after weeks of almost no PMR symptoms, I am back in pain in my legs mostly. My father passed away recently and it has been a stressful time in my life. No tapering for m just yet. If I have learned

    anything from this forum, it is the importance of self-management of this condition.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.