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HELP.......GCA

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mimibird
mimibird

mimibird

mimibird

Posted 44 seconds ago

I was diagnosed with confirmed GCA on March 22, 2021. I was placed on 1000 mg a day for three consecutive days (infusions) I was then place on 120 mg a day for 2 weeks, and have been gradually titrated down this past week to 50 mg. I am new to this and have all the common symptoms of steroids, insomnia, weight gain, etc. and understand that part. My question is since my GCA is controlled, WHY do I still feel like death. I've lost the majority of my muscle mass. Prior to this, I was strong as a horse, played competitive tennis well into my late 60's, but now I can't even get up when I stoop down without help. I am exhausted, have zero stamina, and I don't understand what's going on. I'm seeing 4 specialists, but have only seen my new rheumatologist one time. My ESR reached 121, and he was more concerned with talking about the fact that he was more worried about my having cancer. He did a huge battery of testing and labs and thank God, I got a call from him last Friday saying that cancer was ruled out. Can any of you guys shed any light on this. I don't have my follow-up with him until May 24, and I need help now. Thanks so much

0 likes, 3 replies

3 Replies

  • Anhaga
    Anhaga mimibird

    Posted

    Wow, that is the highest starting dose I have ever heard of. Had you started to lose some vision? I know your ESR was very high, but a more usual starting dose is around 50 or 60 - where you now are, two months later. I suspect such an immense dose is what's making you feel rather awful and you will start to feel more like yourself as you lower more. From these high doses you should be able to come down in pretty big steps for a while, always making sure your GCA is still controlled. I feel you would benefit from the experience of a couple of people who post on the HealthUnlocked site, so google that site and post your question in the PMTGCAuk community. Unfortunately this site is fairly quiet these days, and I don't know if anyone with experience of GCA will see your post here.

    Pred can cause muscle wasting, although not always, and all you can do about that at the moment is to continue to be gently active, to maintain what muscle tone you still have, and your range of motion. But please don't start any vigorous workouts even when you start to feel better. You will need to be rather gentle with yourself for a while.

    Things will get better, but if we learn nothing else from PMR or GCA, it is patience!

    • EileenH
      EileenH Anhaga

      Posted

      The 3-day pulse therapy with up to 1000mg/day infusions is a recognised approach to GCA - I'm sure I've mentioned it before.

  • EileenH
    EileenH mimibird

    Posted

    Have you found your way to this PMRGCAuk forum?

    https://healthunlocked.com/pmrgcauk

    We have several very experienced GCA patients there who will be able to help you a lot.

    How did you follow-up go with the specialist?

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