1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Giant cell

Posted , 8 users are following.

dawn4646
dawn4646

i was diagnosed with giant cell at 48, so that's caused lots of problems , as in I've been tested for all sorts of different things since, as half the doctors don't believe it's that, I've had the biopsy but that was inconclusive, I've been on steroids for about 18 months, from reading this , 40 ml so not as bad as some. I'm now on 3ml , they are kinda leaving it all to me to judge what's good or bad, but I'm not sure how I should feel, I've some aches and strange feelings , under the skin of my scalp but not feeling to bad, just wondered what it's like me for or others coming down, is his normal 🙄

0 likes, 6 replies

6 Replies

  • lodgerUK_NE
    lodgerUK_NE dawn4646

    Posted

    Sent you a PM.

    Try spreading you fingers through your hair and gently tugging all over  - bit like Shiatsu - each hair has a little muscle attached and it frees them up.

    Booklet called 'Living with PMR & GCA' is availble on the website message I sent you via the PM on this thread.

  • iellen32
    iellen32 dawn4646

    Posted

    Finally is really up to us to make some decisions regarding our treatment.

    More we know better we will be.

    I 've been getting good amount of information about my GCA throug the Forums.

    You were 48 - quite early!

    In a way or other you will manage to find some kind of solution.

  • Ardern
    Ardern dawn4646

    Posted

    Hi I was diagnosed with gca most one year ago. I am 67 and have been hovering at 3mg for a onth now. I saw my rhemy today and he said the same thing about tapering it up to me. do it when it feels right. I don't have anything happening with my scalp my face feels puffy at times I just rub it up and down that seems to help for a while, my problems is fatigue and a craving for carbs sugar.

  • Mrs_Hobbles
    Mrs_Hobbles dawn4646

    Posted

    Seems to me if you haven't been feeling any of this and now are, it looks like it's because of the drop in steroids. I understand what you're feeling with aches and weird feelings in the scalp. I also get alot of stabbing pains and the site where I had the biopsy swells and reduces. I've only been diagnosed 2 months and started on 60 and Rheum doc dropped me straight to 30, now I'm on 25 trying to get to 15, so I've been thinking it's the drop and basically just the feeling of the GCA. A bit like you I'm left in the dark about it all and don't know what I should be expecting and just getting on with it! I'm so new to this I don't know whether to say to increase or keep going with tapering but hopefully someone more experienced will come on board and give better advice. Wishing you the best of luck with it all!

    • Anhaga
      Anhaga Mrs_Hobbles

      Posted

      If you have GCA it seems to me that you have been reduced too much and too fast, if you're already expected after only two months to be heading to 15 mg.  My understanding is that you stay at a high level for up to six months.  Not necessarily as much as 60, but maybe something like 30 or so?  Have a look at the Bristol paper which you'll find a link to at the front of this forum.

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

      GCA is a whole other animal compared with standard PMR, like the difference between a tiger and an angry housecat.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.