Read that PMR is rare, read that PMR is common. I am confused.
Common or Rare: Read that PMR is rare, read that... - PMRGCAuk
Common or Rare
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Gary1310
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I don’t know about it being rare, let’s just say until now it was not very well know. I think a lot of people are misdiagnosed and treated for either arthritis or RA.
Until I unfortunately was cursed with pmr, I had never heard about it.
YuliK 🌹
I've wondered about that and maybe it's context. Rare as all diseases go, but common as autoimmune ailments go, and more common as we age. And not all that uncommon in men. Found twice as often in women, so isn't that about 30% male? I'm no good at math....
And autoimmune disorders as a whole tend to afflict females more than males.
DorsetLadyPMRGCAuk volunteer
Good question - according to vasculitis foundation amongst others this -
Polymyalgia rheumatica (PMR) is a rare inflammatory disease that affects older adults, causing widespread muscle pain and stiffness, especially around the shoulders and hips. Most people who develop PMR are in their 60s or 70s. PMR is closely linked with giant cell arteritis (GCA), a type of vasculitis characterized by inflammation of the arteries in the head and temples, resulting in headaches and vision problem........
However in another context -
Polymyalgia rheumatica (PMR) is one of the most common inflammatory rheumatologic diseases in the elderly and is characterized by a specific clinical picture......
So it’s is rare compared to other illnesses - like coronary disease, cancer etc , but it’s a common inflammatory disease.
PMR is the second most common rheumatic disease after Rheumatoid Arthritis, effecting approx 50 out of 100,000 in the US. The rate may be somewhat higher in Northern Europe given the genetic factors predisposing some to the disease. (The US had a very different genetic demographic.)
PMR is exceedingly rare outside of Caucasian heritage, rare among those of Mediterranean and Middle Eastern heritage.
I don't know if any studies have been done to determine the genetic predisposition in those of a more mixed heritage.
It is also rare among those under 50. Women are far more likely than men to develop the condition.
PMRproAmbassador
Although it gets a mention on an American rare diseases site, PMR is actually the most common inflammatory cause of rheumatic symptoms in older patients.
ncbi.nlm.nih.gov/pmc/articl...
However - because it tends to be restricted to an older population it is very rarely seen in under 50s which skews the figures. Within the USA there is wide variation between different areas - one of the highest incidences is found in Olmsted County in Minnesota - a region with a very high populations of Scandinavian heritage. On the other hand, the rate in populations of African or Asian heritage is very low - so areas where there are high proportions of these ethnic groups will have a low incidence.
There is also something and once upon a time I had a reference, and a name for it, which explains some of the clusters of relatively rare disease in areas of the New World. (Defining New World as parts of the planet which have only been infested by Europeans in the last few centuries.) One of the early settlers, or one family of same, carries a gene which predisposes to the ailment and because of the limited population its effect is magnified in a specific area. Is it true that Scandinavians suffer more often than other northern and western Europeans, or is the effect simply magnified in Minnesota? There's a population of French Canadians in Quebec which have a high incidence of an otherwise rare disease and it can be traced back to an ancestor. (Btw this might be the disease, although the name of the process by which its incidence is increased isn't provided in the article: cbc.ca/news/canada/montreal... )
So PMR is related to the ageing process combined with our ancestors' lack of sun ?
I have no doubt they are 2 factors. But only two ...
I've heard it's very common in Scandinavia. Those vikings have a lot to answer for.
Sure do, as maybe(?) proven by this - posted some time ago and maybe not seen by newer contributors -
My family is Swiss, German and French. I live in northern Upper Peninsula of Michigan with a large Finnish population. Maybe it is the lack of sun....Vit D
It is certainly more common the further north you go.
I blame my mother for almost everything medical even if highly unlikely. Its easier all round if we know who is responsible for what. In due turn my daughters now blame me!! I obviously didnt think this blame thing through!!
PMRproAmbassador
If you think so - but the highest incidences in the world are in the Scandinavian countries. There are a lot of Scandinavians in Olmsted County - and while the Mayo Clinic records provided the figures, the local population provided the subjects.
I suppose I could have said colonised, but infested popped into my mind, perhaps because we are talking about illness?
I had my DNA tested and there's no Scandinavian ancestry to blame for PMR but a goodly assortment of other northern European countries!
Found this, which does not really distinguish between Scandinavia and the rest of Northern Europe. The incidence in Minnesota is way higher than in Norway:
Think of the stress of moving.... And then hurricane season....
And....??
I did my DNA and found I am British n Irish mostly. Hmmm my biological father is German. Wished mom was still around we would need to chat.
I love thinking the man who says he is my dad might not be. Only seen him3 times in my life. Heard he is going thru his list of children hoping to land with one of us. As unchristian as that may be I don’t make it a habit of inviting strangers into my home to stay although in my situation he wouldn’t be allowed.
The man whom I always thought was my dad died two months prior to getting my results ..... couldn’t ask him either. My step dad was my father and I was blessed to have him.
In the US from what I have found the medical community say males in their 50’s the cases diagnosed each year is 2% up from 1.7% . Around 55 people out of 100,000.
The numbers are a little higher for women.
I live in Florida and it hasn’t gone away
Most people on this site have no idea what you're on about as this is a UK site. They have national health care.
We do have NHS, but we also understand about medical care in countries that don’t.
WE don't understand it. Can you explain to me, please?
Perhaps I should re-phrase.🤦🏻♀️
We understand it’s different to ours (but perhaps not understand, understand!) ..... ...
in that you have to pay for many things we don’t ...and therefore have more choice (perhaps?) in what specialist you see.
How’s that for a political answer...hope I don’t sound too much like....anyone you know! 😳
Well, it might look like that from the outside, but that's not really how it works unless you have a 24 gold-plated insurance policy. The rest of us are restricted to the providers who accept the policy we have through our employer, are subject to the decisions of the insurance company of what course of treatment we are to follow (regardless of what the doctor decides), pay a fixed fee co-pay for every service, or pay a huge chunk of what's left after the insurance company pays the provider for "reasonable and customary charges" based on a formula that seems to calculate prices in the New York area at something like $1, leaving the balance to be covered out of pocket.
So in my particular case my employer pays $800 /month for the insurance premium, I kick in $200/month, I pay my GP $30/visit as a co-pay and I pay my rheumy $50/visit as a co-pay, Other services are more expensive. I pay $300 for blood tests, and recently paid $400 for xrays and a dexa scan. My prescriptions are $15 each for a 30 day supply - $15 for 5mg pred + $15 for 1mg pred + $15 for vitamin D3 + $15 for calcium + $15 for folate. I'm starting Prolia next month and that will cost $400/per shot after insurance covers the other $1600.
Now, I can pay those other charges (except what I pay out for insurance) with a tax-free "flexible spending account" for all the co-pays and fees insurance doesn't cover. If I guess right at the beginning of the year, I'll have enough to cover. If I guess too little, the rest comes out of my after tax income. If I guess too much, the balance that I put aside but don't use goes back to the company that holds and administers the money and the pay outs to providers. They also get to keep whatever unspent funds are in the account if my employment is terminated for any reason - whether my fault or the employers decision to lay me off. (That sounds fair, right?)
It gets a lot more complicated and expensive when one starts talking about emergency rooms, ambulance rides, surgery, hospital stays, anesthesia, in-hospital doctor examinations and visits, drugs, test, xrays and other imaging, other procedures (including crash cart and CPR services)...We were on vacation in another state when my husband was taken to the hospital by ambulance with a heart attack caused by an undiagnosed arrhythmia. A 5 day hospital stay ( 3 days in the CCU) plus the ambulance plus the cardiologist plus the anesthesiologist plus the pulmonary specialist plus all the tests and imaging and procedures and treatments and IVs and drugs came to just under $150,000 because everything was done by out-of-insurance-network providers, meaning we paid 20% of the "reasonable and customary" charges after meeting the annual hospital services deductible of $2500 in cash. After negotiating with doctors and the hospital and the insurance company, I got the total knocked down to $15,000 if I paid immediately. Otherwise, it would have been $30,000 plus 25% annual interest until the balance was paid off. And that's after the insurance company collected their annual $12,000+ for insurance premiums from him and his employer.
We're lucky. We each earn a good income, we have liquid assets because we are frugal, we have reasonably good insurance and I have very strong negotiating skills. What wasn't so lucky was that this happened in July, after the end of the academic year, and he couldn't go back to work yet in September. He lost his spot in the adjunct faculty and was out of work for more than a year until the next September. He could not get unemployment compensation because the reason he was out of work was that he was unable to work, but he also was not ill enough to qualify for disability income. That, as you can imagine, was really expensive because he lost his income. He also lost his employer health insurance, and the premiums for replacement insurance were unaffordable due to his pre-existing condition.
He's made a good recovery and is back to teaching. He's over 65 now and so is covered by Medicare. His condition is being successfully treated with drugs alone, which are covered by a supplemental policy that costs $135 per month. They'd otherwise cost $650/month.
Wow, this post got quite long. Sorry about that. But this is why whenever I see some of you complaining about your national health care, I get just a little envious. Yes, you don't get what you want on demand, but don't think we do.
Thanks for all that. I know we do complain at times - but deep down we do know how lucky we are - it is free at point of access except for some treatments and prescriptions depending on age/situation - but as you’d appreciate it’s not completely free. But then what is.
My comment was to say we know it’s a different system, not we know how it works.
..Just read that Mick Jagger came to New York for heart surgery. My husband was treated by the same Neuro Oncologist that treated George Harrison (Beatle), at Mayo Clinic.,Rochester, Mn. Many Canadians come to the US for treatment. We must be doing something right. I would not trade our system of health care. Nobody is without treatment.....
Hate to break it to ya, but the US comes in 37th, after Costa Rica (36), Chile (33), Morocco (29), Cyprus (24) , Columbia (22), Oman (8).. .and 2 slots above Cuba (39).
......you are kidding, right?
Sadly, no.
That's interesting because the Somali refugees have found a warm welcome in Minnesota.
My Dad is Polish, I look like his side of the family and his sister had GCA and I got it too. I also lived at very high altitude for several years. Not sure if living at high altitude or descending from folks from high altitude counts
It is a common syndrome that no one has ever heard of.
'Infested' sounds rather accurate to me. What do you think they did? The consequences for the indigenous population and environment were pretty dire.
DorsetLadyPMRGCAuk volunteer
see my reply to teesher above!
Thank you everyone...🌹
I have the same confusion about my main rheumatic disease, Sjögren’s. Is it rare because it’s part of the list of rare rheumatic diseases and affects around one in 2000? Or is it rare because it’s so underdiagnosed? Or is it a common autoimmune disease as much of the online info says?
So I’ve decided it’s rare but only because lots of people choose to self diagnose rather than have lip biopsies and many others get misdiagnosed with Fibro and ME/ FND. And like PMR it’s said to affect predominantly over 40-50s and 9/10 are women but probably this isn’t the case at all. I’m convinced I’ve had it since childhood.
Hi.....interesting! I have Thyroid and Adrenal nodules. I have been hypothyroid and hyperthyroid. Now I have PMR.....?
.
Side note. I wore my suomalainen sisu sweatshirt to rheumy at U of M yesterday. I've been instructing him each visit how to pronounce sauna. He kiddingly continues to pronounce it sawna.
Go Vikings😉
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