I met a 92 year old lady who

Posted , 9 users are following.

       I met a 92 year old lady today who had GCA years ago and was on prednisone for 2 years.  She said her face got so round that no one recognised her!  She said the most important thing is to take calcium!  

         She said it started with a severe headache and an inflamed blood vessel over the eye. A friend told her to get medical help immediately, which she did.

     I was so encouraged meeting her.  Maybe this thing really will be gone someday.

2 likes, 8 replies

8 Replies

  • Posted

    Sure! It may go away someday!

    Thank you for sharing.

  • Posted

    My sister's godmother is in her 90s and got PMR in her 60s. She was on steriods for eight years. She now looks like she could be a model for Vogue and super fit for her age. She said to me when I told her I had PMR, "it is very painful isn't it?" She is spot on.
  • Posted

    Sure it may be gone someday!

    Thank you for sharing your meeting with the lady!

  • Posted

    How encouraging for all of us!! You made my evening, Ann11195
    • Posted

      It made my evening, too.

      To keep our hope alive is part of our treatment.

      We are altogether we are not alone.

  • Posted

    There is a thread on the forum somewhere with stories from people who have got through PMR and GCA and are off pred. In fact, here's the link:

    Discussion for users achieving zero predisone:

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

    MrsO on this forum is just one of the people who has had GCA and got off pred. It does go usually - you just have to be patient.

    • Posted

      What I'd like to see is how long did most people have PMR.  Most posts on that link we're people still talking about their dose they were on, darn it.

      Doctors say 2 years, but I've rarely heard of this. I want to have hope, yet get depressed when I read most people seem to be more like 4+ years.

      Wish there was a real statistical list.

      Would love to know more from that 92 year old lady.

       

    • Posted

      A medical literature review estimated that about a quarter of patients with PMR get off pred within 2 years - but they remain at a higher risk of relapse. Half take up to 4 to 6 years - and the main German rheumatology textbook quotes 5 years as the average length of treatment for PMR. The other quarter need pred for longer, a few for life, but the ones who need it for life COULD need it because their adrenal glands are functioning poorly rather than that the PMR continues all that time.

      Those figures are disputed by some doctors I know - but they are reflected by what I've met on the forums in the last 6 or 7 years. I know people who were off pred in 2 years or a bit over - both PMR and GCA. Most people are in the region of 4 to 6 years and a few of us go on and on and on wink   

      You have to remember that the populations on the forums are a bit skewed - they are more likely to be the people who have problems. If you don't have problems you don't really need support. People who recover generally don't want to be reminded of a dark period of their life so don't stick around on the forums once they are better. They get back to life.

      A quote often ascribed to the Dalai Lama but actually from James J Lachard says

      "Man surprised me most about humanity. Because he sacrifices his health in order to make money.

      Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived."

      Not all is fair - but the bit about being anxious about the future is. We are here where we are. Whether we are going to have to take pred for 2 years or 10 years isn't the most important thing. It is whether we are going to make the most of every day we have.

      Obviously it would be great if we were not ill at all, but If you have to have an autoimmune or vasculitis disorder then PMR isn't a bad one to have. It doesn't kill directly and not even indirectly provided you are well managed with pred. There is no evidence of a reduced life expectancy. It is fairly well managed with a cheap medication whose side effects are well known so most of them can be managed in turn. You tend not to develop it in the first 2/3 of your life.

      What is there not to have hope about? If you want to feel better about PMR then go to a lupus or vasculitis forum and have a read - where you will find young people, sometimes as young as in their 20s, who have an autoimmune disorder that takes normal life away altogether. Not to mention can kill them. And the medications often make pred look a real pussy cat.

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