New Insights to GCA: This is from FB forum... - PMRGCAuk

PMRGCAuk

20,919 members39,405 posts

New Insights to GCA

Joseph14612 profile image
14 Replies

This is from FB forum...interesting, sorry if it has already been posted...

medicalxpress.com/news/2023...

Written by
Joseph14612 profile image
Joseph14612
To view profiles and participate in discussions please or .
14 Replies
SheffieldJane profile image
SheffieldJane

It is interesting and easy to understand.

123-go profile image
123-go

Thank you.

Miacaro45 profile image
Miacaro45

Excellent article and information. Thanks

Temoral profile image
Temoral

Really good article...thank you. Insightful and hopeful for the development of treatments.

Bluey-1 profile image
Bluey-1

A very interesting article. My maternal line suffered from vascular problems. My mother and grandmother lived in fear of getting cancer - often used a euphemism as it wasn’t openly discussed in those days. Neither did but both suffered strokes. This article makes sense on several levels. Thanks for posting.

PMRpro profile image
PMRproAmbassador

Nice outline article - and explains why tocilizumab/Actemra isn't 100% succesful for GCA. I saw a parallel article recently that mentions this upstream problem in the immune system for PMR - so maybe they are beginning to get a handle on where to aim management strategies/treatments.

Joseph14612 profile image
Joseph14612 in reply to PMRpro

"they are beginning to get a handle on where to aim management strategies/treatments."....can't come soon enough for most of us....I have been on Actemra for over a year and am back up to 30 mg pred and 5 weeks on MTX....still flaring, etc,

PMRpro profile image
PMRproAmbassador in reply to Joseph14612

Has your rheumy see the article? It could well be the reason the Actemra didn't work well. Have they ever checked what cytokines are present? There was an Indian gentleman who posted about his wife where GCA was diagnosed, from symptoms I think, but Actemra didn't work. They checked cytokines and then used a more appropriate biologic. Does seem a more logical way to go about problems like this!!

Joseph14612 profile image
Joseph14612 in reply to PMRpro

I doubt if he would read it, but worth a try....

PMRpro profile image
PMRproAmbassador in reply to Joseph14612

That's the trouble with some - too arrogant and think they know it all. How could patients POSSIBLY know anything. I often pass articles on to Sarah Mackie for her opinion and often she hasn't seen them.

Joseph14612 profile image
Joseph14612 in reply to PMRpro

I;m thinking of traveling 5 hours to another state and get treated there...thinking of the Cleveland Clinic, heard good things about others with PMR/GCA going there....

Sophiestree profile image
Sophiestree

Thank you for posting this. It's a perfect article to send to people for an explanation without being too full on and sciency!

Sharitone profile image
Sharitone

"In vasculitis, it's not unusual for some symptoms to go away, but the inflammation in the arteries will go on. The activity of the disease declines with the corticosteroid therapy, but there is still inflammation in the blood vessel,"

'Scuse my ignorance, but does that mean our arteries are permanently inflamed?

Thank you for this article. Not only does it do a good summary, but it provides a challenge for the little grey cells - well, for most of us, anyway.

PMRpro profile image
PMRproAmbassador in reply to Sharitone

"The activity of the disease declines with the corticosteroid therapy"

Have to say, I think that is the wrong way round: the steroid does NOT influence the actual underlying autoimmune disease activity as far as is known, it reduces the inflammation produced. The steroid required declines as the disease activity falls but that isn't the same thing. If you are on enough pred at any given time, then the arteries aren't severely inflamed. but the dose does need to be high enough.

Not what you're looking for?

You may also like...

New to Gca

Hi I was diagnosed 4 weeks ago and have been on 60mg of prednisolone since, but the last couple of...

New to GCA

Just got diagnosed with Giant cell arteritis. Have so many questions and feeling scared. Did the...

New to GCA

Hi. I'm new here. Been reading your posts and so helpful. I'm newly diagnosed with temporal...

GCA New Diagnosis

I am disappointed, I have been diagnosed with PMR since the beginning of November, having been...

New GCA patient

Was shocked to find out I have GCA last week. Had a constant headache for 2 weeks and then parts...