Looking for PMR Meetup groups in the UK

Are you familiar with https://pmrgca.org.uk/ ? I've been getting their newsletter and it is quite good. see attached.

There is an online support group associated with that charity (pmrgca.org.uk) that is very good and very active. You can join by going to healthunlocked.com and signing up for the pmrgca community.

This group has been active for a long time. There is a nice search function for the website so you can search through maybe 20 years of posts. Also, when you post a question, the website provides links to related posts.

There are members from all over the world. People in the UK frequently post questions or announcements about local support groups.

I'm also from the UK so appreciate this information. I was unaware there were any groups at all in the UK. Thank you.

That forum is very good if you are from the UK. I felt alienated on that forum because of being from the USA. It was understandable because our healthcare systems are so different. Also, the approach to treatment in the USA is getting away from long term Prednisone use. That seems to be happening in the EU as well. In my opinion, a few people on the forum in the UK seem to promote the use of Prednisolone and downplay the side effects too much.

As far as I know, Kevzara (Sarilumab) isn't approved for PMR in the UK. Actemra is approved in the UK for GCA but only for one year. Medical professionals in the UK and USA are in agreement that long term use of corticosteroids to treat PMR/GCA isn't ideal.
https://academic.oup.com/rheumap/article/8/1/rkae002/7606885
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I really liked the forum in the UK because there are more people actively sharing their experiences. We all have similar experiences regardless of the country we are from and it is nice to share them.

The forum in the UK talks about local support groups all over the UK. To my knowledge, there aren't many, if any, support groups in the USA. I wish we had those here.

I wish there were local support groups in the US too.

I saw online that there is a Facebook group for PMR and GCA. Have you participated in that group? I'm not interested in the Facebook platform, so I don't know anything about that group.

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,

The UK forum really does have lots of information and several great people with expertise who reply to most posts.