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  3. Polymyalgia Rheumatica and GCA

HOw do we know

Posted , 7 users are following.

karen81902
karen81902

how do we know when it has burned itself out and it is gone?

0 likes, 5 replies

5 Replies

  • Anhaga
    Anhaga karen81902

    Posted

    Whe you have reduced your prednisone to zero and there has been no return of symptoms for a while.

     

  • Bergey
    Bergey karen81902

    Posted

    Hi Karen,

    i saw Anhaga's response regarding the symptoms going away "for awhile" being a sign the PMR has burned itself out.  I stopped Prednisone last July 5 and felt absolutely fine and symptom free for several weeks.  Pain and stiffness returned very suddenly on a late Friday evening in early August and just when I was ready to contact my rheumatologist on the following Monday, they completely went away!  No more symptoms and felt fine....until mid September and little by little, day after day, the pain, stiffness and fatigue began creeping back and I went back on Prednisone in October and am doing the DSNS method.   So, this PMR has a mind of its own and I will postpone a victory dance until I am several months post last dose!

    • Anhaga
      Anhaga Bergey

      Posted

      I don't know if any of us ever get completely free.  Seen postings recently from someone who was in remission for twelve years or so and then it came back.  Guess we just always have to look after ourselves, hoping the need for prednisone doesn't recur.  Funny you should have mentioned my use of the words "a while".  I spent "a while" trying to think what words to use.  I chose those so as to leave it completely open to interpretation!

    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      I think the key message here is - it goes into REMISSION.

      Whether or not it returns is "luck".

      I have come to terms with the fact I HAVE PMR and eagerly await remission, but expect that I will never be free of it entirely.

      Still better than terminal cancer. lol

  • denisep911
    denisep911 karen81902

    Posted

    I'm so grateful for this group

    I'm learning so much. Thank you all??

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