I agree that it would be nice to have PMR/GCA support groups in the USA. I hope it happens someday.

No ... I have never seen the Facebook forum. I don't know anything about it except there were some "disenchanted" people on the PMR/GCAuk forum that left and formed their own forum on Facebook. That was more than 5 years ago.

I haven't been on PMR/GCAuk for many years either. I didn't get a very good reception when I was seeking information about Actemra back in 2019. One moderator said my experience with Actemra wasn't pertinent in the UK. It was funny, because when I left the forum, the same moderator who actually lived in Italy started Actemra for PMR. I would love to know what her experience with Actemra was.

I don't have a Facebook account but my wife does. I might check out the Facebook forum someday.

The PMRGCAuk forum was great except for just a few who claimed that they were entitled to know everything about PMR and tapering prednisone. They were allowed to give their medical advice. They had a "medical background" but they weren't qualified to give medical advice. I ended up listening to my own doctor and I'm happy that I was able to taper off Prednisone after 12 years of treatment with Prednisone for PMR. Had I listened to their medical advice, I'm sure I would still be taking Prednisone.

I think a charity that advocates for people in the USA with PMR and GCA is a good idea too! Mayo Connect is good in my opinion. There has to be many people in the USA who are diagnosed. Unfortunately, PMR is a relatively common but under-researched inflammatory rheumatological condition. People with PMR often feel isolated and alone,