Good website for GCA

[Broseley]

This website is New Zealand based, but I think it is really good. The veterans on this site may already know it. There is a link towards the bottom for PMR too, which has a nice list of pred side effects. bpac.org.nz/bpj/2013/june/a...

[winfong]

Yup, pretty good stuff. I always hate it, tho, when they limit everything to just temporal GCA. Extra-cranial's important too.

[DorsetLady PMRGCAuk volunteer in reply to winfong]

Extra cranial (LVV) is mentioned, but article is over 8 years old, and if I think back to when I was diagnosed, not sure that term was used as much as it is now. Although it was obviously about.

[piglette]

I am not sure about their statement about the significant risk factors for GCA.

“The most significant risk factors for giant cell arteritis are:

Age > 50 years

A previous or current diagnosis of polymyalgia rheumatica

Female gender

European ethnicity”

[Broseley in reply to piglette]

Why is that, please?

[piglette in reply to Broseley]

That is what it says in the article mentioned. It seems strange you have to be female to have GCA and already have PMR.

[Broseley in reply to piglette]

It's saying you are more likely to get it if you meet these criteria, not that you have to.

[SheffieldJane]

This is useful confirmation Broseley. The taper sounds challenging - it must be flexible and symptom led. As someone with GCA/LVV I am also concerned that I didn’t present with typical cranial symptoms. My diagnosis was achieved via specialist ultrasound scan, abnormal cells being found in my left armpit.It is useful to read the results of NZ research, thanks for sharing!

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Tapering is taken from BSR guidelines- and yes it is challenging, but that’s something we all know.

[PMRpro Ambassador]

I have it bookmarked and have used it quite a bit in the past - but as it warns at the top, over years old and a bit dated. You might be surprised how much has happened just in the last 5 years.

[jinasc in reply to PMRpro]

Never mind the last 5 years, think back when you became heavily involved. 2008 ring a bell?

[PMRpro Ambassador in reply to jinasc]

Well yes - but the rate of improvement IS increasing!

[jinasc in reply to PMRpro]

Of course it is - we shoved hard.......................

[PMRpro Ambassador in reply to jinasc]

Seem to remember the odd kick involved too!!!

[jinasc in reply to PMRpro]

♿️ 😈😈😈