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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)
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@grammy82

@nyxygirl
If I am not mistaken....you also have Dr. John Stone! I believe he participated in the clinical trials for Actemra.

When I was finally diagnosed with GCA in 2019 and searching the Internet to see what it was....the only thing I found was a video of Dr. Stone telling GPs how to better diagnose GCA...scary.

I did everything I could to make videos about GCA available on YouTube for folks like...all of us. They are there now from the charity Health Unlocked in England.

Knowledge chips away at fear and also makes us more informed patients.💞

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Replies to "@nyxygirl If I am not mistaken....you also have Dr. John Stone! I believe he participated in..."
nyxygirl | @nyxygirl | Jun 5, 2023

@grammy 82 - you give good uplifting messages! Sebastian Unizony, MD who was on the Sarilumab Trial is also at MGH.
Might I ask you - have you ever gone down the path of looking into advocacy through Rare Disease patient groups ?? It all came together for me today - PMR is a rare disease! In USA there is NORD, for example.

A good friend responded to my PMR news today saying she was sorry to hear " although sometimes having a diagnosis helps you understand what treatments are out there" YES ! And my former boss gave me a good pep talk today about being on Prednisone - jeesh, he has gout !! -Which sounds awful.
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