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Why me !!!

Posted , 9 users are following.

teresasmith
teresasmith

im 3 yrs into pmr had steriods reduced to the point of getn of them and being pmr free but within a month im back on steriods as my counts go crazy again 6 wks ago i was diagnosed with gca started on 60 ml steriod which is now at 40 ml i started tocilizumab injections yest ive not heard much about it so was looking for any advice from some1 who is already on it i was 46 when diagnosed pmr and 49 for gca my consultand seems more worried about my age than any complications with gcai had an eye test and theres no inflamation there so that was a posotive just looking to swap stories thanks teresa

0 likes, 5 replies

5 Replies

  • Heron82
    Heron82 teresasmith

    Posted

    Hi Teresa,

    I've had PMR for nearly 3 yrs now having been diagnosed at 57. I had a flare which developed into GCA in Nov and was on 60 mg pred until Dec, now on 25mg trying to reduce to 22.5mg, but finding it difficult as inflammation and symptoms come back the next day each time I try to go to 22.5mg, though I did attempt to reduce after only 7 days of 25mg. I guess we need to be patient and keep persevering with the dead slow reduction method. Some people have this for 6 - 8 years or longer, I've learnt to go with it and do what I can and am managing to keep active and positive. We could be a lot worse off.

    It is difficult to differentiate the PMR symptoms from the pred withdrawal symptoms, so if anyone has any advice on this that would be very welcome.

    Stay safe and relatively well.

    Heron

  • EileenH
    EileenH teresasmith

    Edited

    If you join the HealthUnlocked PMRGCAuk forum you should find quite a few people who are on tocilizumab.

    https://healthunlocked.com/pmrgcauk

    It must be so disappointing to have such a massive step backwards. You have been very unlucky - but we have had a few people on the HU forum recently who were nearly off pred for PMR and have been told they have GCA. One has had PMR for about 4 years I think but was really struggling to reduce her pred dose but an ultrasound of the artery under her arm showed inflammation, presumably GCA so she is up to 30mg - and feeling much much better. She also SOUNDS much better in her replies to others, clearer and thinking better.

    • Tinapoly1
      Tinapoly1 EileenH

      Posted

      I thought that they had to take a part of the temporal artery to check of large cells that indicate GCA. So they can take a small piece out of an underarm artery instead Eileen ?

    • EileenH
      EileenH Tinapoly1

      Edited

      The temporal artery is small and superficial, easy to get at, and there are other arteries that supply the same areas so they don't need to sew the ends of the cut artery together (called anastomosis), they just tie the ends off. The artery in the underarm is a major artery supplying the arm - still up to 4mm diameter towards the top of the bicep. It would require major surgery to remove a piece for biopsy and sew the artery up so the blood flow is maintained.

    • teresasmith
      teresasmith EileenH

      Posted

      thanks ill have a look the only eeason i e not had a biopsy done is because of corona virus my rhuematology consultant has been pulled into the bosputal wards to work just now but she got another consultant from the glasgow royal to look after me ive been in i isolation for 8wks now i had my eyes checked at hospital and luckily theres no inflamation around them so thats a bonusthis other consultant seems more concerned about my age getting gca i thot with me being younger and relativlly fit it was an advantage

      thanks for the commenta

      teresa x

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