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How often does PMR progress to GCA?

Posted by charlotte61 @charlotte61, Nov 11, 2023

I'm just wondering how many forum members here had their PMR progress to GCA? I did some research on the latter yesterday evening (perhaps unwisely) and scared myself half to death when I read about the risks of stroke, blindness, aneurysm, etc., associated with GCA. I also learned that the relatively low doses of prednisone we take for PMR won't do anything to prevent the development of GCA -- which was another shock. It seems the percentage of people with PMR who go on to develop GCA varies quite widely in the literature, so I wanted to know what your own experiences have been. I would like to do everything and anything I can to prevent GCA, but it looks like there's not really any way to prevent it -- it just happens in some people, sometimes without warning. How many of you experienced visual problems with your GCA? I have to say that blindness is one of my biggest fears, so reading about people who wake up one morning unable to see out of one or both eyes terrified me. To be frank, I'd rather be dead than blind. Just interested in hearing from those who are actually going through these diseases what your experiences have been with GCA and visual disturbances. Thanks! 🙂

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nancy53 | @nancy53 | Mar 22 4:05pm
In reply to @tsc "Hi @charlotte61 and @nancy53, don't be to scared about GCA, but be on the alert for..." + (show)
@tsc

Hi @charlotte61 and @nancy53, don't be to scared about GCA, but be on the alert for symptoms - scalp tenderness, difficulties seeing, stiff neck, headache, loss of appetite, dry cough, itchiness, problems chewing, fatigue, loss of appetite. Any symptoms like that merit immediate attention, especially disturbances in vision, as you noted @nancy53.
Both my mother-in-law I had it, diagnosed with biopsies of the temporal artery.
We received high doses of prednisone, tapered and went into remission, with no lingering problems.
I have osteoporosis but it was diagnosed before I went on prednisone.

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Thank you. I think it's the name alone that's so scary. Anytime I feel a slight headache I wonder if it is GCA. I'm not typically a hypochondriac, but PMR has me on edge.

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charlotte61 | @charlotte61 | Mar 22 4:29pm
In reply to @nancy53 "Thank you. I think it's the name alone that's so scary. Anytime I feel a slight..." + (show)
@nancy53

Thank you. I think it's the name alone that's so scary. Anytime I feel a slight headache I wonder if it is GCA. I'm not typically a hypochondriac, but PMR has me on edge.

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I'm the same - every twinge in my head I think it must be GCA.

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Teri | @tsc | Mar 22 5:18pm
In reply to @charlotte61 "I'm the same - every twinge in my head I think it must be GCA." + (show)
@charlotte61

I'm the same - every twinge in my head I think it must be GCA.

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I understand. I lived with PMR and GCA for a year before diagnosis and appropriate meds.

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trina24 | @trina24 | Mar 28 10:35am

I was freightened about that also, but I asked around and it does not occur that often.
Theresa

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charlotte61 | @charlotte61 | Mar 29 2:47pm
In reply to @trina24 "I was freightened about that also, but I asked around and it does not occur that..." + (show)
@trina24

I was freightened about that also, but I asked around and it does not occur that often.
Theresa

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It seemed to me like it happens often, but I assume that's because the only people posting about it are those who have it. Those who got through PMR without ever developing GCA probably wouldn't be -- and that could amount to a lot of people, although I'm not sure.

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