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Polymyalgia return after 9 years

Posted , 5 users are following.

hilary1954
hilary1954

I am a female aged 67 and had Polymyalgia 9 years ago and went onto Predneselone tablets . I went from a dose of 20mg down to 1mg . This took 2 years.

I was then taken off the steroids but was told to keep some packets of 1mg and to take one if i felt the pain return. This i have done at odd times but not too frequently. I now have the pain in my shoulders, hips and hands again, very painful in the mornings and this has now been happening every day for the past couple of months.

Has anybody else had it return after all this time?

I would be grateful to know!

0 likes, 6 replies

6 Replies

  • Anhaga
    Anhaga hilary1954

    Posted

    This is experienced by a fair number of people. I'm afraid you won't get many responses here as the site has become rather inaccessible to use. Try the HealthUnlocked website, the PMRGCAuk community. Sorry I can't post a link.

    • lbh
      lbh Anhaga

      Posted

      Hi Anhaga,

      I'm sorry this is not related to the question. I used to use this forum frequently and I remember your name and your helpful replies. It is a few years since I have been on the forum but am now appalled at the difficulty of access and where is our beloved Eileen. What has happened?? I'm devastated 💔

      Where does one go for helpful replies nowadays?? Hope you are doing ok and thank you in advance.

      Lynne

    • Anhaga
      Anhaga lbh

      Posted

      Go to HealthUnlocked. Sorry I can't post a link, I tried once and the reply was deleted. Eileen is PMRpro on that other forum and I am HeronNS.

  • james39360
    james39360 hilary1954

    Posted

    Hi Hilary,

    Exactly that. My PM has just returned after 9 years. Was on 40 mg prednisolone, and tapered off with no further pain/discomfort. I had only shoulder pain first time round but this time shoulder, wrist and finger pain. Back on 20 mg prednisolone which is reducing the pain but not got rid of it completely. With the pain in wrist and fingers was wondering if it really was PM.

    Hope this helps

  • EileenH
    EileenH hilary1954

    Posted

    I know a few people who had PMR return after a period of years.

    This forum is near enough inactive - a complicated story but it became impossible to use easily and then they stopped notifications to members about new postings. Hardly the way to encourage us to use it! We have almost all moved over to the PMRGCAuk forum at HealthUnlocked which is very active and has a host of easily available information in the FAQs

    https://healthunlocked.com/pmrgcauk

    By the way - if you relapse. 1mg will do nothing and after all this time I imagine your tablets are years out of date so please don't use them,

    See you at HU

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