This is from FB forum...interesting, sorry if it has already been posted...
New Insights to GCA: This is from FB forum... - PMRGCAuk
New Insights to GCA
It is interesting and easy to understand.
Thank you.
Excellent article and information. Thanks
Really good article...thank you. Insightful and hopeful for the development of treatments.
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.
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.
"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,
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!!
I doubt if he would read it, but worth a try....
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.
Thank you for posting this. It's a perfect article to send to people for an explanation without being too full on and sciency!
"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.
"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.