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Looking for PMR Meetup groups in the UK
Polymyalgia Rheumatica (PMR) | Last Active: Dec 30, 2024 | Replies (7)Comment receiving replies
I'm also from the UK so appreciate this information. I was unaware there were any groups at all in the UK. Thank you.
Replies to "I'm also from the UK so appreciate this information. I was unaware there were any groups..."
The UK forum really does have lots of information and several great people with expertise who reply to most posts.
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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.