Recent publication

A series of articles from “ experts “ looking at different aspects of GCA from pathnogenesis to treatment

academic.oup.com/rheumatolo...

[DorsetLady PMRGCAuk volunteer]

Very interesting, for me particulary the comments regarding the effectiveness of a biopsy on the temporal artery! It's something I always witter on about, my temporal arteries were never enlarged nor painful, and I'm sure if I had been subject to a TAB I would have had a negative result.

But I sure as hell had GCA, and got the scars to prove it!

The sooner doctors get away from the TAB scenario, and trust the symptoms the better as far as I'm concerned.

[Polywotsit PMRGCAuk team member in reply to DorsetLady]

It makes me cross that so many biopsies are false negatives. Soon, ultrasound will be just as reliable if not more so - we just need the equipment and trained sonographers to be available. Incidentally though, what I hadn't really thought about until recently is that biopsy tissue is extremely useful at the moment for research, because individual cells can be 'harvested' from it and studied.

[DorsetLady PMRGCAuk volunteer in reply to Polywotsit]

Hi Kate,

So agree, we hear more than a few on this forum saying their biopsy was negative, and as we know that answer may lead to no action, or at least not the correct action being taken in a timely manner whilst the is it?/isnt it? is discussed.

As you say equipment and staff required, but unfortunately that the NHS's problem in lots of areas. But we live in hope.

[Hidden in reply to DorsetLady]

I just skimmed through them but thought the article on TAB’s was particularly interesting too DL. 😀

[PMRpro Ambassador in reply to DorsetLady]

I've whinged about TAB being the "gold standard" for years - more like fool's gold!

The trouble is, all too often the most junior general surgeon who may never have done one before gets the job - put it in the hands of a good vascular surgeon who does them regularly and I bet you would get a very different result. Doesn't alter the fact of course that it will remain "negative" in all the cases where the GCA is affecting other arteries.

I really like this journal - not least because it is "free to air"!!!!

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

I so agree about "trusting the symptoms". Once I moved on from 3 useless GPs to a rheumatologist, there was no suggestion of a TAB - he treated me purely on the symptoms. But then, it WAS Dr Rod Hughes!!

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

...and he knew about GCA!

Unfortunately as we know some of the symptoms can be attributed to other illnesses...especially if you get “it’s your age” attitude as well.

But it does appear that things are looking up!

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Just hope not too many doctors continue to leave the NHS, or at least that those who are left are the really knowledgeable ones!!!

[Polywotsit PMRGCAuk team member]

This is great isn't it - a whole issue dedicated to GCA, something that wouldn't have been possible just a few years ago. John Stone is the lead clinician of the international GiACTA trial of tocilizumab in GCA. This is attracting a lot of attention at the moment, as we know. It's just pity that these papers were published too late for them to be considered by NICE in the technical appraisal of TCZ in GCA for the National Health Service. We should be hearing the decision by the end of next week.

[Hidden in reply to Polywotsit]

It’s great, another twitter find. I hope that medics will read them and become more educated!!

[PMRpro Ambassador in reply to Hidden]

Don't hold your breath!!!!!! Though I know my rheumy will have read some of them - he helped write some!

[Hidden]

Thank you so much Keyes for making these articles accessible. It is so valuable to be well informed and know the right questions to ask in order to get the right options and even challenge my rheumatologist. It is the feeling of being empowered and trusting myself to be in charge of my body that I most covet. This information is a big part of that.

[Hidden in reply to Hidden]

Couldn’t agree more, knowledge is power and allows us to become true partners in our care.

I just wish that they provided lay summaries of these articles and made them more accessible to patients.

[Sho-Sho]

Really useful articles and research, thought I knew everything about GCA having been treated for it for the last 20 months and have done loads of research into it myself trying to understand what's going on plus coping with the fairly horrendous side effects of high steroids.

Thanks for the pointer.

Sho Sho

[northwesterner]

WOW great information