Numbers

[jimcarlow75]

Hi all, just wondering if there are any statistics concerning the people who have PMR. Over the years, have these numbers gone up and why. What do we do that is so different to our ancesters. Did they just not know about it in those days and put it down to the old rheumatics. We almost all carry more weight than we should, except in places like Japan, do they suffer from PMR, Anyone help ?

[DorsetLady PMRGCAuk volunteer]

Hi, Answered similar recently - so copied here -

As for how many people have PMR - well wouldn’t we all like to know....

Figures from 2019 from one study -

The overall incidence rate of PMR was 95.9 per 100,000, and the incidence was highest in women, older age groups, and those living in the South of England.

The annual incidence of giant cell arteritis in the UK population is approximately 20 per 100,000 people

If you consider that the over 50s make up 34% of UK population - so around 22.4 million - so that gives an approx figure of 21,500 for PMR & GCA - 4,480

I wouldn’t guarantee numbers, but it’s as good a guess as yours or anyone’s probably.

Previously - sure it wasn’t diagnosed as readily, put down to old age and “rheumatics” - as most would say!

Plus of course, we are all living longer, so more likely to succumb to more illness.....

and life is more stressful, or if not more stressful, different stress and perhaps we don’t cope with it as well!

More prevalent in Vikings - and their descendants- slightly tongue in cheek view - healthunlocked.com/pmrgcauk...

[SheffieldJane]

I believe that my maternal great- grandmother may have had GCA, misdiagnosed as a brain tumour, she had bad headaches and loss of sight. I think the diseases have been traced back to the Vikings. Freyja should know ( DorsetLady). This was discussed a few years back.

[jinasc]

Japan has Takayasu Syndrome and it is thought to be a close relative............

medicinenet.com/takayasu_di...

Sent you a PM.

[HeronNS]

Most likely due to diagnosis. It wasn't really separated out as a disease until relatively recently when it was called senile rheumatic gout. Aren't you glad it isn't called that any more?mayoclinicproceedings.org/a...

[PMRpro Ambassador]

Pre-war there was no treatment (pred hadn't been invented) and my grandfather and a great aunt both had what was almost certainly PMR - rheumatics, as you say.

Asian and black African populations have a very low rate of PMR, not unknown but they make up only about 0.5% of cases. Doctors in Japan seem quite good at managing it - but they don't see a lot. It becomes more common the further away from the equator you go - the highest rate is in Scandinavia.

I think the incidence has risen - because people live longer and it is predominantly a disorder found in over 70s although you can develop it much younger. Plus most were already retired when they got it and accepted it was part of aging - now we work longer, we are more likely to need sick leave and it becomes an economic factor. However, a Keele study found the rate has risen but has stablised - no idea how to find the study, happened on it in the last couple of days.

There are plenty of slender people who develop it - so weight probably isn't a factor.

It was first described in 1888 by Bruce, GCA in 1890 by Hutchinson, the link wasn't identified unti 1964 - but all the cases Bruce described were men, which hardly fits with the actual incidence of at least 2 women for every 1 man, and it is probably even more skewed.

[jimcarlow75 in reply to PMRpro]

Thanks for that, very interesting.Didn't realise Scandinvia was the worst incidence area.

My first bout was about a year after my business partner died, bit traumatic for me at the time. Could have been a link there..don't know.

[PMRpro Ambassador in reply to jimcarlow75]

The original paper is an interesting read, as is the history in general

ncbi.nlm.nih.gov/pmc/articl...

ard.bmj.com/content/annrheu...

A lot of research has been done by the Mayo at Rochester - it is in Olmsted County which has a particularly large population with Scandinavia heritage.

[francko in reply to PMRpro]

Is this the Keele study you refer to: ard.bmj.com/content/77/12/1...

[PMRpro Ambassador in reply to francko]

Yes - thank you!!!!

There it is behind a paywall but you can read it all here:

core.ac.uk/download/pdf/161...

They say "The incidence of PMR appears higher in the South of the UK compared to the North" - which I find quite amusing and suggests to me that while Keele is hardly the south, maybe the team are! My experience of the NE is that people wouldn't go to the doctor with the symptoms of PMR and might well struggle to find a doctor who recognised it if they did!

[winfong]

Wondering if anyone had similar figures for GCA and LVV (i.e., not GCA and not TAK).

[PMRpro Ambassador in reply to winfong]

In

academic.oup.com/rheumatolo...

Christian Dejaco says "GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]. Modern imaging studies using vascular US and/or 18-fluorine fluorodeoxyglucose PET/CT (18F-FDG PET) have demonstrated that at diagnosis, up to 80% of GCA patients as well as one-third of patients with PMR have subclinical LV inflammation. Patients with treatment refractory PMR commonly have cranial and/or extra-cranial arteritis on imaging "

Part of the problem is that most of us aren't or weren't subjected to the full gamut of imaging that would identify LVV. It is relatively new, not widely available and expensive. I had a pretty textbook presentation of PMR other than being relatively young (51 when it first appeared) and blood markers that ran high for me but never out of normal range. However - I briefly had scalp tenderness and jaw pain when eating and severe thigh muscle claudication on activity which suggest that at at least some point I had LVV/GCA.

[winfong in reply to PMRpro]

I ran across something that said straight up LVV (not PMR; non-temporal GCA, if you will) was 1 / 100,000 in the areas where it's prevalent (northern Europe and North America) and not 1/100,000,000 in the rest of the world. Wish I had recorded the sources. :^(

[PMRpro Ambassador in reply to winfong]

Not good on this sort of maths in my head but since 80% of GCA patients and a third of PMR patients are said to have LVV - that figure you quote must be for LVV as an individual disorder which it has been since 2010.

orpha.net/consor/cgi-bin/OC...

[winfong in reply to PMRpro]

Hard to keep track of it all, especially as I seem to be in the minority with straight- up LVV being my main complaint. I do have PMR as well, but not to the degree that most people in this group seem to have.

[PMRpro Ambassador in reply to winfong]

Possibly a minority here. People with a straight dx of LVV probably wouldn't land up here, they might try VasculitisUK which isn't the most active forum nowadays.

[yogabonnie]

How are you doing now?????