GCA article

[Raven1955]

Spotted this article in the Minneapolis Star/Tribune, April 14 edition

startribune.com/hcmc-vison-...

It got me that the first visit to his eye doctor resulted in nothing being done and being told he saw nothing wrong and it might go away on its own. He was fortunate to regain some vision though.

[DorsetLady PMRGCAuk volunteer]

Yes he was lucky to regain some vision- many of us weren’t so fortunate ….

[KCRoyals in reply to DorsetLady]

Hi DL, you said before you had blindness due to GCA. Was wondering what were your symptoms and how was the attempt to treat it. If this is too invasive I'll really understand.

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

Hi

Not a problem-always happy to spill the beans if it means stopping others going through similar.

Probably easiest to attach link -which covers most of the issues -but if you want clarification on anything specific just ask -

healthunlocked.com/pmrgcauk...

[KCRoyals in reply to DorsetLady]

Thx DL, as someone below indicated below diagnosis of PMR and GCA by "professionals" leaves a lot to be desired. Been on Prednisone now for 12+ years although I was given the 2 year limit for the disease/ailment and I'm sure it's triggered quite a few other things.

Always good to read your input.

[PMRpro Ambassador]

Bit confused - eye doctor or optometrist??? Different things I thought - ophthalmologist is the eye specialist, optometrist is an optician.

Lucky man!

[Raven1955 in reply to PMRpro]

Yes, the terminology was clear as mud in that part.

[Preacherball]

I live in a suburb outside of Minneapolis. Glad he got the help he needed and it didn't turn out even worse. I have GCA but it was caught early at the U. of MN. and I have never had any eye issues.

[Grammy80]

)I was happy to see the article and wish it would be published in every paper. Maybe it would work better if the American Medical Association published more information about it in their Journal. Rare disease..it was my experience in 2019 with GCA that the physicians in America RARELY diagnose it correctly or at all.

Something dawned on me when I read that article...shockingly when I woke up blind in one eye (8/2019) at 3 am and was taken to the hospital by ambulance, they never gave me any steroids....they kept me in the hospital until 4 pm that day when friends drove me to a hospital arranged visit to an ophthalmologist who gave me a script for prednisone tablets...125 mg per day. While at the hospital, they did have the vascular surgeon's PA come and make arrangements for a temporal artery biopsy in five days. AFTER that, I had three days of IV steroids.....I wonder if I would have gotten any of my sight back.

Usually, I'm pretty positive, but that article made me concerned for anyone in this country who has GCA,...obviously, it frustrated me too. I'm very happy for Mr. Robb.😢💞