I would benefit/ have benefitted from a moderated... - PMRGCAuk

PMRGCAuk

20,269 members37,944 posts

I would benefit/ have benefitted from a moderated online forum for people with PMR and/or GCA to share experiences/provide support

Dev_Director profile imageDev_Director111 Voters
108
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3
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7 Replies
PMRpro profile image
PMRproAmbassador

There are three such forums active in the UK already - the HealthUnlocked one was the third of them. The original one was on the Patients Experience website, a site set up by doctors for doctors and patients and it is still running after several years. It is very closely moderated. The forum linked to the PMR and GCA Northeast Support Group site at forumup is also very closely moderated whilst allowing a "support group" feeling as a wide range of topics are discussed - including family matters, gardening, pets and holidays!

raymck profile image
raymck

What about Club Zero for us ex steroid takers?

Green_girl profile image
Green_girl

I looked when I started with this condition nearly three years ago now - and could not find anything. I think I ought to join Club Zero now - as have not touched a steroid for 5 months and feel fine (apart from some stiffness and achy-ness)!! Aren't I the lucky one - and I'm really grateful to be able to say that......and so feel for those who can't get of steroid.

suzy1959 profile image
suzy1959

I am really grateful for this forum and find it both very supportive and informative.

Carris profile image
Carris

Thank you for the forum, it makes one feel like they are not alone, plus valuable information is offered.

30048 profile image
30048

This forum is the BEST thing that has happened to me since I was diagnosed with GCA three years ago.

bunky52 profile image
bunky52

This forum has been so helpful and informative. I read it every day. I felt so scared and alone upon being diagnosed with GCA. It helps me so much to know I am not alone and it also makes me realize there are so many others worse off than me.