PMR REMISSION

Posted , 6 users are following.

A curiosity. If your PMR is gone, you are in remission, then you no longer look at this forum, or comment...correct? Wondering if Eileen might have an idea about this. Wouldn't it be uplifting to hear from some people who are in remission...hear about their journey?

1 like, 6 replies

6 Replies

  • Posted

    Yes. How long did it take?
    • Posted

      How long is a piece of string? It can be anything from under 2 years (very rare) to more like 5 years (about average) with some people taking far longer. I've had PMR for 11 years and counting - but I feel extremely well on my current 4mg and can't imagine actually feeling significantly better if I weren't taking it. PMR doesn't stop me doing things - I've learned to live with the restrictions and adapt to them. 
  • Posted

    Yes but if they are no longer here then how will we hear from them??
  • Posted

    There are actually several people who regularly contribute to one or other or all three of the forums in the general posts - MrsO and lodger are just two but they are also heavily involved in the support group set-ups and the charities. This and another forum both have places where people who have been able to get off pred have posted stories. 

    At the bottom of the first post in the link with resources that I often post

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

    you will find this link:

    Discussion for users achieving zero predisone:

    https://patient.info/forums/discuss/zero-predisone-discussion-450915

    It isn't surprising that there are relatively few people who have recovered on the forums - for many people it is a part of their life they would rather forget quite often. They go back to a more normal lifestyle and no longer require the support to have "is this normal" questions answered or the sounding board which the forums supply.

    Following the forums does take a lot of time these days, it didn't at one time but the traffic at present is very high - which is compounded of course as each site becomes even better known. 

    • Posted

      Thank you Eileen! Wonderful stories from Club Zero! Everyone does have a different story, yet there are many similarities to what most people experience with PMR/GCA.
  • Posted

    yes its lovely to hear people do get better from pmr. how long they have been free of it and how they get back to normal life x

     

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