I got a newsletter from the RNIB (a charity I support as I am severely visully impaired). In the latest edition there is a case study of a man who had suddenly gone blind from something called Temporal Arteritis. Now I know from being on here for years that is also called Giant cell arteritis or GCA but this doesn't mention that. So then I Googled temporal arteritis and there is a lot of info but our charity website doesn't come up. And I got very different results Googlng temporal arteritis to if I google GCA.
This also made me think. When I was first diagnosed I didn't catch what the GP said I thought I had, so when I went back after the successful trial of steroids I asked again and got him to write down what it was - polymyalgia rheumatica. It was only a few months later when talking to a friend who is a GP she said it is usually abbreviated to PMR and it was 'nasty'.
This makes me wonder if if part of the problem of raising awareness and reaching out to sufferers is that often people might not actually know what it is they've got - maybe they just say as I did initially 'poly something rheumatica'? Or even think they've got fibromyalgia because it sounds similar?
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tangocharlie
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Not sure why they say that - when you look at their alphabetical list of eye conditions they have an entry for Giant Cell Arteritis [GCA] but not Temporal Arteritis 😳
The ophthalmic artery supplies blood to the various tissues of the eyes, including the optic nerve, which is prone to being affected by GCA. If there is ischaemia of the optic nerve, there can be sudden and severe sight loss as a result. Unfortunately, the optic nerve cannot recover from the lack of blood supply, so the sight loss is usually permanent.
Well done Miss Marple I never thought of that. I remember once many years ago I had a 'GCA scare' with headaches etc and I went to A&E where the doctor looked at my optic nerve and said it was fine so no need to worry but usually when you read about warning signs for GCA it mentions things like arteries and biopsies etc etc. So can a simple look at the optic nerve rule out GCA?
Not entirely. Longerterm poor blood supply to the optic nerve will cause the optic disc on the retina to become paler and enlarged, But if the GCA is sudden in onset you are less likely to see that.
If it’s that sudden, very little unfortunately- although the Prof did extol the use of bedside ultrasounds in the recent webinar …how realistic that is I’m not sure…
I doubt they are likely to diagnose that much faster if any vision loss has already occurred. But that is why the default is to start high dose pred immediately there is any suspicion it could be GCA. But when that isn't in their mindset ...
When I was diagnosed in 2012, the ophthalmologist registrar called it Temporal Arteritis - but nowadays it seems to be more commonly referred to as Giant Cell Arteritis.
I’ve always put it down to the information which usually refers to the temporal artery being affected [from personal experience it isn’t ] - and the biopsy thereof.
It also implies that the temporal artery is the one that directly causes sight loss - again erroneously- it’s the ophthalmic artery being blocked that stops the blood getting through to the optic nerve - and the eye. Got the t-shirt on that one too. 🤦🏻♀️
Agree you may be correct on patients not fully understanding the difference - or similarities - whichever way you look at it.
The primary caoncern has to be they won't realise it is the same when looking for info and support. Though having just googled temporal arteritis, almost every link that came up mentioned both names.
It is a concern when it supposed to be treated as a medical emergency [no comment on that].. and as I said yesterday in a zoom meeting in some places things don’t seem to have moved on that much in the last 15years…
That's what I was trying to say. If 'Kevin' googled Temporal Arteritis he wouldn't have found this forum, for example. On a related point, I had to see a GP recently as I had a strange ear/jaw pain, like pressure when in an airplane, and he diagnosed inflammation in my eustachion tubes. I asked if that could be a sign of GCA as I have PMR and he assured me not, and said GCA always shows as jaw claudication and swollen arteries in the temples. I said it can mainfest in may different ways eg toothache but he didn't believe me. There's a long way to go with GPs .....
Your comments on understanding the diagnosis rang a bell!I didn’t really have clue what the GP said initially. However, she realised I wasn’t taking it in, and printed off a sheet from the Pmrgcauk website, which was invaluable.
Yes, I can remember her asking if I’d had any headaches, which I hadn’t, but I had no idea what that was about. It was good that she was checking though, bearing in mind what we know now.
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