I wonder how many people in the US/ Uk, other countries, come down with PMR or GCA in a year. My Rheum says it is common but what does that mean?
How many people get this, yearly, I wonder? - PMRGCAuk
How many people get this, yearly, I wonder?
Written by
3daysinjuly
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•
I think I read somewhere that about 59 out of 100,000 people over the age of 50 will develop PMR in a one-year period. The risk for developing PMR is about 2.4% in women and 1.7% in men.
We have rotten luck then!
Yes, Jane, but I can’t help wonder why, let’s say, you or any of us, had a major stress event, or a flu shot or even ingested a toxin like a pesticide.....why did it then have to turn into THIS form of disease. This is overly simplistic, I guess, but.....I can’t get the why out of my mind.
Because sometimes the body has just had enough and something has to give!
In our cases it’s an auto immune illness, for others it’s a heart attack or cancer! Looked at like that, it’s not so bad.
Just accept it’s what it is- it’s NOT your fault, there’s nothing you could have done to stop it, it’s just life!
An immunologist maybe able to discuss this at length. I feel kind of fortunate to have developed PMR rather than a great number of other autoimmune diseases. At least we have a good chance of recovery. I only know that in my case, the stress of looking after my poor mum with dementia and discovering that she had been taken advantage of financially to a huge extent and having to unpick all that and move her to Sheffield, legal issues rumbled on painfully and took a terrible toll. When my mum died I started to feel as if I had low level flu . Then I literally felt like I could hardly walk. There was something illustrative about my PMR I.e. “ I can’t go on “ and one day you actually can’t go on. The burning pains matched the rage I felt when I uncovered the extent of the theft. In a sense my body seemed to be acting out my emotions. It made me stop, it made me an invalid, it made me rest. Ultimately it probably saved my life. There isn’t much option but to focus on yourself. However much you see yourself as the care giver for others.
Yes it's true many of us get to that stage where we can't go on. And I know how lucky I am it's PMR. "At least it doesn't kill you". Although as I said to the doctor who who said this to me, "Sometimes you wish it would". She was taken aback by that comment.
If they knew that - they could find a way to manage it better! And actually - no, my experience with immunologists is they don't know either!
• in reply to3daysinjuly
health.harvard.edu check this site too for info on PMR.
Nothing new there then🤨
Yeah, when you look at those numbers, I would say VERY unlucky. And I think UK beats US in per capita cases.
• in reply to3daysinjuly
Yes indeed. The numbers for North America are pretty insignificant compared with other diseases so I guess there is little incentive for research. etc. But, check also with the organization called Rare Diseases in the US. Unfortunately in North America there isn't one great PMRGCA body or site like this one in the UK. But if you check under vasculitis or arthritis or rare diseases you can glean quite a bit of information on PMR.
piglette• in reply to
Also pred works incredibly well so it is not really in drug companies' interest to try and improve on it.
That, I believe, is the key point. The money.
3daysinjuly• in reply to
There is Mayo Connect. A group forum like this but for many diseases including ours.
I can't help thinking that if PMR and GCA are as 'common' as suggested then WHY aren't more medicos better informed about 'treatment(s)' !?
Our resident 'experts' here will know much more about these details than me but I read somewhere that after RA that PMR is the next 'most common' AI disease - can't recall the citation for this though and most articles I just glanced at again don't necessarily seem to confirm this. I'm sure someone here will be able to give some interesting figures though which also might include variations in different geographical locations.
Best wishes
Rimmy
Very true. I think I read it is mostly seen in Northern European ancestry. Well, my grandparents came from Poland, so....
But yeah, so many people I talk to have never heard of these 2.
See my answer re Vikings 😉
• in reply toDorsetLady
I had my DNA done through ancestry and was quite chuffed with the Scandinavian connection until my inner Viking leapt forth in the form of PMR and GCA!
I don’t think many of us had heard of it before we got it. I certainly hadn’t. General awareness is growing, largely due to this charity in the U.K.
I'd never heard of pmr till I got it and joined this site.I don't think my previous GP had either😂.Did people not get pmr 20 years ago or was it called something else like rheumatism?Is it caused by the stressful lives some of us had at the time and how our bodies individually coped with it.........I wonder🤔
I think it was put down to age and ‘rheumatics’ ! And therefore very often left untreated. A few patients on here have said their grannies or aunties or mum (more often women as already discussed) had something similar but not given the name PMR or GCA.
My mum who is 86yrs old is convinced my'aches'are caused by the wet weather.😊
To be fair wet weather does not help. I had very little pain in Australia but was permanently damp with er glowing.
I always think it is a common disease that no one has ever heard of (until they get it).
PMRproAmbassador
PMR is the most common cause of rheumatic symptoms in over 65s - but it ISN'T common in younger age groups. The trouble is, the symptoms can be due to all sorts of things and have been thought of as a natural part of aging as it has affected probably half of over 80s at some point. Both my grandfather and a great aunt almost certainly had PMR in the 1950s/early 60s - but it was put down to "rheumaticks" and accepted as normal for their age. It has been known about since 1888, GCA shortly after, but steroids weren't developed until the late 1940s - so for a long time there was no way of managing it. You put up - and whinged about how stiff you were!
academic.oup.com/rheumatolo...
GCA is rare - most GPs probably will have seen a maximum of one patient in a lifetime of practice. Rheumies should know better - but they are told that PMR is easily managed with pred and only lasts a short time. We do know better...
.....Oh do we ever! Well not me personally with PMR......but GCA was long enough.
The National Organization of Rare Disorders (NORD) estimates that there are 450,000 Americans with PMR. But, I have read that roughly 750,000 Americans have PMR. rarediseases.org/rare-disea...
Compared to Lupus and Rheumatoid Arthritis numbers of those with PMR are much less common. When I was diagnosed with GCA and symptoms that I had not reported months earlier led to PMR diagnosis as well, my doc said, "This is common". No way do I think the numbers show they are common in the general population. But, we are considered an "elderly" population and there for a smaller group to begin.
I think it should be 450,000 not 750,00 according to the article.
Yes, I don't recall why I put the 750,000 number. But, that is a number of Americans I have read from other sources who have PMR.
Given the seemingly poor abilities of many US doctors to diagnose PMR I imagine the actual figures are somewhat higher!
Check vasculitisfoundation.org for stats for Polymyalgia Rheumatica.
It's common in populations of northern European origin.
NanJean• in reply to
It maybe considered common, but I think the word occurs in northern European populations is more accurate. Sweden has the largest number of people with GCA. According to my Rheumatologist, the Swedes are very good at reading ultra sounds that show a halo instead of temporal artery biopsies. That test is available in the US, but our radiologists aren't so good at reading them.
My husband got our family into genealogy DNA testing. From the site 23 & Me, you can participate in research. Only recently they asked about auto-immune conditions. which included PMR. They didn't ask about GCA.
My father's side which is Ashkenazi Jews, was all Northern Europe. My mom's side Haptoglobin group migrated from Finland and they are not Jewish. It was my Jewish Aunt, who had GCA & died of complications from the steroids. She lived across the country in Idaho.
This is from 2008 ncbi.nlm.nih.gov/pmc/articl...
"We estimated that among US adults, ...711,000 have polymyalgia rheumatica, 228,000 have giant cell arteritis..."
It was interesting to find the the biotech company Genentech has a link about GCA. gene.com/stories/getting-di...
Makes me wonder if they're working on a drug for it.
My family doc (smallish town) says he sees 5-6 cases of pmr a year. Says it’s an increase from his earlier practice. But then he added, “although I might not have recognized it back then!”
I think that the results may be skewed because the the US I feel misdiagnoses GCA quite often. My physician even said so the other day. Between the insurance hoops one had to jump thru for specialists and pre- approvals for the temporal biopsy. Also the gold standards for diagnosing GCA in Europe are updated and thoroughly researched. I feel like possible cases are treated as possible because it can be impossible to diagnose definitively. The standard in the US for diagnosis is from 1990 and is very rigid. Doctors will simply look at a normal ESR rate and say you definitely do not have GCA even if every clinical symptom is staring at him (that was me last week!). Went to my arthritis guy who knew a bit more, but had to look it up as we were talking. He at least put me on prednisone right away until a biopsy is done.
"the gold standards for diagnosing GCA in Europe are updated and thoroughly researched."
Sorry - they can't blame that! These days work is done together by the ACR and EULAR and the groups doing the work probably have more people in the USA than anywhere else! HOWEVER, the most recent lot aren't officially issued by ACR/EULAR yet, hopefully in the next few months, although they are in the medical literature in the meantime:
sciencedirect.com/science/a...
If a doctor is looking at 1990 stuff then that is that doctor being lazy/incompetent and not keeping up their reading in the field. Any doctor who hasn't updated in the last nearly 30 years shouldn't be a doctor - and actually, should have retired by now!
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