Confusion with different names: Polymyalgia rheumatica and PMR, Temporal Arteritis and Giant Cell Arteritis and GCA

[tangocharlie]

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?

[PMRpro Ambassador]

Rather appalled that the RNIB is so out of touch! Temporal arteritis is SO last millenium. Maybe you should enlighten them?

Mind you - heaven help us when the movement for GCA-PMT Spectrum Disease takes off!

pubmed.ncbi.nlm.nih.gov/373...

[tangocharlie in reply to PMRpro]

The NHS s equally out of touch then as it mentions temporal arteritis mostly in their website

[AmberGamble in reply to tangocharlie]

My sister, who was an Opthalmic Nurse, seems to think that Temporal Arteritis was always the U.K. ‘name’ for it and GCA was more the American ‘name’.

I was diagnosed in the US, and when the Dr said I definitely had PMR, but she also thought I had Giant Cell Arteritis (but she hoped I hadn’t!) - I honestly thought she said arthritis! I still thought that it was some kind of weird arthritic condition, however the Giant Cell bit really threw me.

My sister knew of it so I found it on the NHS website as Temporal Arteritis.

I’m sure most of the people I’ve told what I have also hear it as arthritis!

[PMRpro Ambassador in reply to AmberGamble]

I know of NURSES who confused the two - ending up with patients hearing artheritis!

The term giant cell arteritis was coined in the UK by GH Jennings, working in London. Horton in the USA had earlier described it as seen in the temporal artery but it was already not the whole story. I do wish everyone would drop the old terms - but in France it is still often called Horton's disease which is even worse!!!

bmj.com/content/1/4548/443

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

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 😳

rnib.org.uk/your-eyes/eye-c...

..and at least they do state this -

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.

[tangocharlie in reply to DorsetLady]

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?

[PMRpro Ambassador in reply to tangocharlie]

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.

[tangocharlie in reply to PMRpro]

So what are they actually supposed to do and check in such situations?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

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…

[PMRpro Ambassador in reply to DorsetLady]

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 ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

But if the GCA is sudden in onset you are less likely to see that. As the patient, or anything if you’re unlucky😳… but I know what you meant😊

[tangocharlie in reply to PMRpro]

I should probably alert Sophie to make official contact with them. a bit more clout than little me ringing them

[DorsetLady PMRGCAuk volunteer]

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.

[PMRpro Ambassador in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

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…

[tangocharlie in reply to PMRpro]

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 .....

[PMRpro Ambassador in reply to tangocharlie]

I just googled "temporal arteritis support uk"

First on the list was Vasculitis UK and we were second. And we appeared 3 times on the first page.

[tangocharlie in reply to PMRpro]

I just put in temporal arteritis and got mainly the US sites such as Mayo and the NICE/CKS guidelines. Some nice pictures came up though

[PMRpro Ambassador in reply to tangocharlie]

I had to add UK.

[tangocharlie in reply to PMRpro]

But would you think to do that if newly diagnosed?

[PMRpro Ambassador in reply to tangocharlie]

Probably not, though if you get the genrral US-centric stuff, surely you would try to find something from here? No-one has a UK search engine!!!

[tangocharlie in reply to DorsetLady]

I'm wondering whether 'Kevin' also got PMR?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

May well have, but then RNIB wouldn’t necessarily highlight that - but they do mention it being connected in the fact sheet.

[Charlie1boy]

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.

[tangocharlie in reply to Charlie1boy]

That was lucky. I was given something about the warning signs of GCA to look out for but it was from patient.co.uk

[Charlie1boy]

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.

[Rabbit090]

My own consultant at Addenbrookes (on the Vasculitis team and is also a professor and researcher at Addenbrookes) considers GCA and Takayasu’s Arteritis (yet another large vessel Arteritis) a sort of a spectrum of autoimmune diseases which really just depend on where in the vascular system they affect.

That said, despite Takayasu’s (which I have) simply involving more of the aortic system and less of the cranial arteries, there’s good evidence that there’s a genetic component to it. I was quite confused when I read it is much more common in women of East Asian descent until I saw other studies that included those of Mexican heritage (my father is Mexican!).

Either way, there’s so much that many autoimmune diseases have in common, including some potential triggers that make them appear - like other viruses whether new or reactivated and new treatments like stem cell transplants that have the potential to cure them!

[PMRpro Ambassador in reply to Rabbit090]

Actually I think the belief about the Asian connection was because the first work and cases were found in Japan and much more recent work has shown it is found it is found across all ethnicities - just not identified because it wasn't looked for.

There is a multi-national movement trying to establish this concept of GPDS and Dasgupta said recently that he now has support for including Takayasu's in the spectrum.

pubmed.ncbi.nlm.nih.gov/373...

In the rest - not sure about TA - the genetic component is for the predilection to develop them and is linked to mainly northern European genes. I wonder when someone will link it to "where the Vikings got to"??

Who is your rheumy? David Jayne?

[Rabbit090 in reply to PMRpro]

Kevin Loudon - not a rheumatologist but a renal and Vasculitis consultant.

I did think the same about the prevalence of research and cases in Asia and thought the same but did see other genetic research though and when I saw the Mexican connection, started thinking about the origins of the indigenous people of Central America which is, of course, northern Asia, albeit 10k years back. There are conflicting reports of Takayasu running in families but from a personal perspective, virtually every relative on my father’s side died of heart disease of some sort and I have to wonder how significant arterial inflammation might have been considering the lack of diagnostic abilities

It’s all quite fascinating really. Will need to download this one when I can get to my login: pubmed.ncbi.nlm.nih.gov/387...

[PMRpro Ambassador in reply to Rabbit090]

Yes - Jayne is too isn't he. It certainly is fascinating. Occasionally I wish I'd continued with medicine and ended up in this field - and I don't understand why some rheumatologists think PMR is beneath them to take notice! And that I think is a major problem - instead of realising it is different, they try to ram it into the box they are familiar with instead of admitting that really, it is a different thing.

[Rabbit090 in reply to PMRpro]

Yeah - I started way too late. I’m trying to make up for it with some certificate courses (cognitive psychology currently) and would love to get the certs in research theory and practise but I have no idea what I’d do with them. Not sure anyone really wants a researcher of my age. Just a folly for now, but a fulfilling one.

[PMRpro Ambassador in reply to Rabbit090]

Depends on whether you need to be paid. Sometimes we older members have insights the 20-something doesn't.

[Rabbit090 in reply to PMRpro]

I totally believe that but there’s definitely a bias towards the young in a city like Cambridge!

Still, it’s something I’m seriously considering. I have a few years before I retire and I was (probably luckily in some ways) laid off in September from my tech job with a good severance. Feels like time to do something more satisfying.

[tangocharlie in reply to Rabbit090]

Get in touch with other researchers like Sara Muller and pick their brains

[Rabbit090 in reply to tangocharlie]

Who is that? I’d love to pick some brains.

[Zappata in reply to PMRpro]

On a side note research into diseases and genetics will probably be more enlightening to archaeology as to how ancient people's spread around the world than digging up the odd body

[Rabbit090 in reply to Zappata]

Yes! I’m super interested in comparative evolutionary neuroscience as well - how intelligence has arisen has implications for how our own minds work, which is something we are still struggling to understand completely. And linguistics. I could do with a couple more lifetimes honestly. 😂

[PMRpro Ambassador in reply to Rabbit090]

Trouble is, we often find the really interesting things so late in life that our experience isn't as usable as it might be, I know I see things very differently from young researchers who maybe aren't as aware of some of the pitfalls!!

[Rabbit090 in reply to PMRpro]

Indeed. In fact, it’s one of the core philosophies behind DEI. I always wanted different perspectives in my teams where I could get them.

[Nutsandseeds]

Only this morning, I was musing on the difference in my diagnosis and treatment at our surgery as opposed to my husband who was diagnosed as diabetic 20 years ago. We have been registered at our surgery for 35 years always with the same GP. My husband has had superlative care over the years and is carefully monitored regularly by a special diabetic team who know him well and he keeps well. Last summer I was in desperate pain and kept going to physios ( surgery and private) but the pain was not abating. Eventually a temporary physio at the surgery asked about my symptoms and I mentioned both shoulders. He immediately said I think you may have Polymyalgia. Like lots of people I had never heard of it. My own GP was clearly not happy prescribing steroids and gave me 5 tablets which I assumed would solve the problem 🙄. I managed another 3 weeks before I had to go back and a locum immediately prescribed Prednisolone and hand wrote the tapering plan that I would follow on a piece of paper. Fortunately I discovered this site and as others have, can now manage my symptoms and I have extended my knowledge. Not one person from the surgery has inquired about how I am coping since I was diagnosed 5 months ago. 🤷‍♀️

[PMRpro Ambassador in reply to Nutsandseeds]

Which suggests a total lack of understanding about the things that parallel with diabetes - one being that if they don't look after YOU you could well join your husband as a diabetic where they do understand the long term effects of management. I was told this morning by an endocrinologist that with the state of the NHS it was unlikely even short-term use of a CGM would be offered to pred patients. Which is really short sighted because understanding how pred affects our BS is a very important factor in reducing the longterm effects of pred without the need for rushing patients off it.

[Nutsandseeds in reply to PMRpro]

Keeping my BS under control has been part of my health regime for some time and certainly pre PMR. I certainly have never wanted to follow in my husbands footsteps. I am super careful with my diet and exercise now as my BS has gone up with the steroids. All very dispiriting

[PMRpro Ambassador in reply to Nutsandseeds]

But very enlightened of YOU!

[Nutsandseeds in reply to PMRpro]

🤞🤞

[tangocharlie in reply to Nutsandseeds]

You might find it iteresting to read my post on what I discovered using a CGM. My BS were high according to the HbA1c but I managed to get it back to normal by a combination of generally low carbs but also eating at the right time ie after the glucose rush from the Pred settles down in the evening. You say you're super careful with your diet, what have you found works well?

[Nutsandseeds in reply to tangocharlie]

I shall look that up tangocharlie. I get up really early and go to bed early also. I have a restricted eating window but always have good protein and fresh vegetables. These steroids have caused me to gain a bit of weight and my brain seems to have gone into slow motion 😬

[tangocharlie in reply to Nutsandseeds]

healthunlocked.com/pmrgcauk...

I also wrote a follow-up post as I bought another CGM to continue the experiments

[tangocharlie in reply to Nutsandseeds]

Sounds good. I've managed to lose a lot of weight through low carb and time restricted eating, as well as getting my blood sugars down. Remember what we have is not quite the same as Type 2 diabetes, it is actually steroid induced hyperglycaemia. I very much doubt taking diabetes meds would have sorted that out without the accompanying changes in eating, I just knew from everything I'd read from teh likes of Michael Mosley etc it was more complicated than my GP thought. He and the diabetes nurse who tried to tell me I needed to eat more bread and fruit have both left now which is a shame as I'd love to stick The Blood Sugar diet book up their @rses. 😆😆😆

[Nutsandseeds in reply to tangocharlie]

That made me laugh out loud 😀😀. My first hero in my transformed eating patterns was Dr Rupy a good few years ago now. He completely changed my thinking and I felt better immediately with my new regime. I have tweaked it over the years to suit me and prior to the dreaded PMR I have had a very active retirement!

[tangocharlie in reply to Nutsandseeds]

He had a few fleeting appearances on the Glucose Goddess programmes recently (Jessie Inchauspe). I'm glad you've found a routine that works and you'll continue to have a good retirement despite the irritations of of pesky PMR

[Nutsandseeds in reply to tangocharlie]

👍👍👍😘

[tangocharlie in reply to PMRpro]

... and that men generally get taken more seriously than women. After all it's all just in our heads or we're depressed and we just need to lose weight and do more exercise. I wish someone would do a study on how and why women are gaslighted so often. Just one example. When I fell and hurt my ribs last year and went to A&E they refused to do x-rays as there was no point as it wouldn't change anything. My dad fell the other day, went to A&E, he got x-rays immediately and was told he had 2 broken ribs, but there's nothing you can do about them. Immunology refuse to do allergy tests on me, yet my brother got them no question with similar symptoms to me. I haven't yet come across a case of a man having to take iver a year to get dx with PMR but many cases of women. Ooh now look, I've got myself all worked up ... time to go to bed or do some yoga ... 😆

[PMRpro Ambassador in reply to tangocharlie]

To be fair - I imagine your dad is a bit older than you and there are other things they would have been looking for there!

[tangocharlie in reply to PMRpro]

Yeah but still, I was in great pain and breathless but computer said no. I have loads more examples of how men I know usually get taken more seriously than women when it comes to healthcare. I'm not saying it's a breeze for men either, but there is an unconscious bias or ignorance against women

[Zappata in reply to tangocharlie]

And not always from men sad to say

[Rabbit090]

My doctor seemed very unconcerned about blood sugar, perhaps because he’s hoping I won’t be on Pred long term. Still I’d be interested in recommendations for a monitor (though not using Zoe as I understand that’s a subscription service and I have more than enough of those).

[tangocharlie in reply to Rabbit090]

I use Freestyle from Abbott and have written posts about my experiences - you get a free trial if you say you are diabetic or pre-diabetic freestyle.abbott/uk-en/home...