GCA source of GCA

[Shanghi]

I just saw this on facebook & thought I would post it here.

facebook.com/groups/giantce...

[DorsetLady PMRGCAuk volunteer]

Might be worth looking at - there are a few different Facebook groups for GCA & PMR - but it’s not run by the UK charity, so just be aware of that….if you need to ask for advice.

[JuneWalker]

I was in that Facebook group for a very short time. In my opinion they thought they were experts on everything.

I enjoy the knowledge and personal experience this group has. I have learned so much about my GCA here. I do have a fabulous group of specialists but I also learn from the experiences of individuals who actually suffer from GCA. Twenty years ago my husband had PMR for 3 years, I learned a lot from his PMR. Thanks again to this group for your time and efforts. Cheers from Canada.

[Shanghi in reply to JuneWalker]

Hi June, I agree re the fb group, but yesterday when I came across the post by Bruce Wilson, I checked further & he has posted a wealth of info (studies etc.) on GCA that somehow I never seemed to get on the site. I agree that this forum is excellent, & am thankful for the support from all these wonderful people.

Btw. I'm from Montreal😊

[Shanghi in reply to JuneWalker]

Also June, you mentioned you have a fab group of specialists, you can't possibly be in Quebec.

[JuneWalker in reply to Shanghi]

I was born and raised in Gaspe, Quebec. I live in Edmonton, Alberta. Health care is far superior in this province. I had my specialists appointment quickly. Rheumatologist, neurologist, neuro ophthalmologist and pharmacist. Follow ups are fantastic. This disease is dreaded enough, let alone not having a supportive health team.

[Shanghi in reply to JuneWalker]

It's great to hear that you are on good hands. It seems the doctors here are not even aware of GCA or of so, don't give out much info. Here we really have to be our own advocate.

[JuneWalker]

Sorry to hear. We all need to be our own advocates. I don’t take all their statements as the law. My rheumatologist specializes in GCA and PMR. Wishing you all the best.