When I spoke to my practice’s pharmacist recently she told me that the practice (which has about 15,000 patients) has about 40 patients with RA but far fewer with PMR. I’m wondering whether that’s a really small number of patients with PMR and whether that reflects the practice’s patient demographics as an inner-London practice (younger and mixed ethnically).
How common is PMR?: When I spoke to my practice’s... - PMRGCAuk
How common is PMR?
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Siena62
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" I’m wondering whether that’s a really small number of patients with PMR and whether that reflects the practice’s patient demographics as an inner-London practice (younger and mixed ethnically)."
i would think so - it is rare in under 50s and also in Asian and Black populations. Add to that it is very badly diagnosed as well!
nhsinform.scot/illnesses-an....
rarediseases.org/rare-disea...
It is actually the most common cause of rheumatic symptoms in over 65s and is far more common as you get further north and Scandinavian countries than it is around the Mediterranean. Doesn't alter the fact a lot of work on it is done in Italy though!!
It is all down to those Vikings...........🤔 😉 😈 🙉 🙊 🙈
For sure!
One of my GP’s near retirement said he expects to see about 3 PMR patients diagnosed a year and GCA he’s seen 3 in his career or something like that.
In Normandy, France, I was told by my internist that he sees 4 or 5 cases of GCA a year, but I've no idea what percentage of his patients that represents.
When you say internist, is that the primary care provider or the hospital specialist? If it is your PCP they must be a darn sight better at recognising it than the average UK GP then!
Ah, just seen your explanation. Now that's interesting - a medical specialist who will have an overview and joins up the dots! What a good idea - shame they dispensed with them years ago in the UK. Do you also have a rheumatologist?
No rheumy, just the hospital internist. Fortnightly phone consultations and blood work .
If you are an inpatient the ward team are generalists and they have a daily case conference. Sometimes it works really well with your specialist having input - unless you end up seeing one of the dodgier ones as has happened to both my husband and me. The cardiologist is lovely but seriously overworked and it is next to impossible to see her except the annual MOT for the pacemaker when she has no time to spare. Same applies for the rheumy who is the regional director of rheumatological services - if he weren't I doubt he'd have come here. But he is a very busy bunny. There was a new appointee who was superb back in the summer but he seems to be head of rheumatology in another hospital the other end of the region now. They have kept the loony Italian woman though 
That seems quite a high figure. Could you tell me what an internist is? Is it different from a GP?
An internist is a hospital-based specialist and has a good overview of all sorts of conditions. I've seen them described as "experts in complexity". When diagnosis is unclear, an internist can spot links that specialists can miss because they are too focused on just one aspect or organ. A kind of medical Sherlock Holmes. Mine seemed really motivated to get to the bottom of my symptoms (very high ESR and CRP, aches and pains in shoulders, neck, groin area) which my GP didn't understand. The internist put me through loads of tests including 13 vials of blood taken for analysis , MRI, X-rays, ultrasound and Doppler scans and finally a Petscan to eliminate other problems. A biopsy confirmed GCA/LVV. I was referred by my GP because he didn't understand what was going on.
Hmm - I'd describe them as hospital-based GPs. When they are good they are very good - but when they are less good, they can be horrid!
The GP son of a friend told me that the best and keenest med students choose to become either internists or nephrologists ... this is in Normandy, don't know how true it is of other regions in France! But as you say, there are no doubt good ones and bad ones. I've been blessed with a good one. I would still go to my GP for anything other than GCA, but I haven't needed to so far 🤞
can I ask please what is LVV, only few weeks ago I had an MRI on hip as groin pain through the roof, and thigh inside and top, results showed, 2 tears around ball and socket of hip joint, back exray also showed some involvement in pain , final diagnosis, bursitis and tendonitis in hip, now am having GCA symptons, increased pred by rheumy and sending me for ultrasound, temporal arteritis he said,
Large vessel vasculitis - the bridge between cranial GCA and PMR and affecting mainly arteries in the trunk
I wonder, if every patient presenting with PMR symptoms underwent a Petscan, how many would show up as LVV. Probably not viable financially for health services, but maybe some cases of cranial GCA (and possibly loss of sight) could be avoided.
Quite a lot I suspect. At the N&N hospital in Norwich the GCA chap does screen every PMR patient for GCA. PET-CT scanners aren't the cheapest item - the machines cost a small fortune so there aren't that many about and cancer patients get priority. Though PET-CT isn't the ideal for cranial GCA since the brain takes up glucose anyway and that swamps the inflammation signal.
Absolutely, my Petscan went only from neck to pelvis, stopped at my subclavian arteries at the top and at the iliac division at the bottom. It took a biopsy to confirm that the inflammation was also higher (and maybe lower, not sure what goes on below the hips)
According to my GP/PCP, who's probably in his 50s, I was the first GCA patient he ever saw
I can believe it. jinasc tells the story when she developed GCA her GP practice was on the ball because the senior partner had missed a GCA call as a very young doctor. The patient lost their sight and the GP swore it would never happen again. The next case was jinasc - many years later.
Happened to me as well -but sure as heck she’ll recognise it in future…after my trials and tribulations!
I was incredibly lucky when I presented with classic GCA symptoms as my young GP had just been on a GCA/PMR awareness course. She simply said 'There's something I'm 95 % sure you don't have but I'm testing for it'. 24hrs later I was on 45mg Pred and 12 hours after that all symptoms had disappeared like magic never to return. I was immediately referred to Oxford Rheumatology and had 3 ultra scans during the next 2 years. PMR slowly emerged as the Pred reduced and now after 4 years I'm reducing from 5mg with really no remaining symptoms. My GP is happy to let me handle the pace of reduction. I have been very lucky, almost blessed, and this wonderful forum has been my daily support. Thank you, dear friends.
rheumy has prescribed 25 mgs of pred with my new GCA like symptons? and to continue on that daily until get the ultrasound done, does does prescribed depend on the inflammation marker numbers ?
They have a bearing-but as we always symptoms are the key -and there are internationally agreed guidelines for doses for suspected GCA. But the doctor makes final decision based on a number of things.
I think I read there are around 44,000 registered with PMR from a population of over 60 million in the UK.
But registered where?
It's estimated 1 in every 1,200 people in the UK develop the condition every year.nhs.uk › conditions › p...Polymyalgia rheumatica - NHS
So that works out to about 50,000 I think based on 60 million. However I was thrown out of Maths in the 4th form 🤣🤣
I may be embarrassing myself here 🙄
I did maths a bit longer bur that stuff makes my head hurt these days!!!!
I dug some info out last year -from NICE
Last revised in January 2019.
Next planned review by December 2023.
PMR
How common is it?
Polymyalgia rheumatica (PMR) is the most common inflammatory rheumatic disease in older people [Matteson, 2017; Partington, 2018], and one of the most common indications for long-term corticosteroid treatment in the UK, accounting for 22% of prescriptions [Dasgupta et al, 2007; Ameer, 2014].
A large population-based study (n = 5,364,005) assessed the incidence, prevalence, and treatment burden of PMR in the UK over two decades (1990–2016) in people aged over 40 years [Partington, 2018]:
During the period, 42,125 people had an incident diagnosis of PMR. 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 prevalence of PMR in 2015 was 0.85%.A study of primary care computer records assessed the prevalence of PMR and giant cell arteritis (GCA) in a GP practice in Norfolk by reviewing clinical data for diagnoses of both conditions.
This was supplemented by postal survey (to identify potentially undiagnosed cases within the practice population) and subsequent clinical review (for those screening positive for potential diagnoses of PMR and GCA [Yates, 2016].
From the GP case records (n = 5159), 117 people had a recorded diagnosis of PMR and 21 people had GCA.
From the population survey (n = 4728), no new cases of PMR and GCA were identified among 2227 completed questionnaires returned.
The resulting cumulative prevalence estimate in those aged 55 years and older meeting 5 published criteria sets for PMR ranged from 0.91–1.53%.The prevalence of both conditions was higher in women than in men, and in older age groups.
GCA
Last revised in March 2020
Next planned review by March 2025
How common is it?
The annual incidence of giant cell arteritis in the UK population is approximately 20 per 100,000 people [Smeeth et al, 2006].
A full-time GP is likely to see a new case every 1–2 years [Barraclough, 2012].
The incidence varies with age, ethnicity, and gender.It is rare before 50 years of age and the highest incidence is in people aged 70–79 years [Mackie, 2020].
It is seven times more common in white people than in black people and is particularly common in Scandinavian people, with an annual incidence of approximately 30 per 100,000 people in Norway [Calvo-Romero, 2003].It is 2–3 times more common in women than in men [Ly, 2010].
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. [Ameer, 2014; Matteson, 2017; BMJ Best Practice, 2018].
If you’re taking 60million (actually think it’s nearer 68 nowadays) that includes all age groups. Quick look about half of that are under 40 so you can discount them -
get the abacus out again 😊
my GP told me the surgery had lots of patients with PMR
If that's true - you'd think they'd be better at it wouldn't you!!
There is one article in the medical literature that claims 75% of GC diagnoses involving PMR are incorrect! It works both ways - they diagnose people with PMR that isn't and miss even more with PMR that is!
exactly. Or because it isn’t so common you would think they would take an interest and learn more
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