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Feeling upset

Posted , 11 users are following.

Anhaga
Anhaga

There is a Facebook page called Surviving polymyalgia rheumatica without prednisone.  And a person posting that she cured herself by following a very strict anti-inflammatory diet.  When I tried to get more information (how long had she been ill, how did her recovery progress, etc) she took offense.  I had suggested that if her recovery had been a genuine recovery from PMR she should publish a paper because there are thousands of us who could benefit.  So now I feel a little sick because she took offense and refused to answer my questions.  But what if she is right?  But I know she can't be, not for the majority of us anyway.  And by advocating this method she may be endangering people at risk of GCA.  

0 likes, 134 replies

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  • FlipDover_Aust
    FlipDover_Aust Anhaga

    Posted

    HI Anhaga

    I joined this group the other day to see what it was like (after reading this post) and it seems that there's a few problems with people's understanding of the purpose of the page..... unlike this forum there's a bunch of people saying really stupid things and giving poor advice.... not a lot about 'surviving PMR without pred!

    I'm so glad I found this forum first or things would have been very differentt over the past year. Fancy listening to a bunch of fools who are in-fighting!

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      I withdrew from the group after another day or two.  It seemed a shame because I did feel I could have been a voice of reason - after all, who amongst doesn't want life without pred? - but it was not the right place for me.
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      it's not the right place for me either.... pity. BUT, we have each other....lol

      I'm still following the full auto-immune 'diet' and feeling so much better - I would have loved to have more discussions about it...

      You are a proponent of healthy living, I'll just have to chat to you instead!

    • Mrs_CJ
      Mrs_CJ FlipDover_Aust

      Posted

      Hi Flip (love your name)

      I think I remember you posting about your auto immune diet as I've been feeling crummy - again - and am thinking a diet change might help.

      Do you happen to know the name of the topic you used?  

      Sometimes great info appears under different starting topics.....and I would like to read about what you are currently eating as you are saying you are feeling much better.  

      And do you think yiur imorovement is just your diet or could it be the MX and the resulting lower dose of Pred?

    • FlipDover_Aust
      FlipDover_Aust Mrs_CJ

      Posted

      Thanks! I've been called Flip since I was in grade 3 - it's one of those things, I'm Not sure if I grew into the name or the name suited me. Lol

      this is the post to which you refer https://patient.info/forums/discuss/my-experience-with-methotrexate-and-the-auto-immune-protocol-diet-or-the-worse-than-paleo-diet--501840

      i really don't know if it's the drugs or the diet, but Mr Flip has also improved since I changed our diet, so he's my control subject lol

      eating fresh food can never be wrong.  

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