Amy Oshier Health Reporter for NBC 2
"It sounds like nothing most people have ever heard of: polymyalgia rheumatica. But more than 700-thousand Americans learned about it the hard way."
I don't know where she got the number, but she quotes Lee Memorial Health System rheumatologist Juan Bustillo.
If the number is corrrect, then we are a large group here in the US!
Hello Paula, yes I believe there's loads of us. I think I read somewhere that 1 in every 1000-1200 Brits are effected.
regards, christina
That is a large number indeed.
I was curious about the entire article and googled it. I don't know if this will work, but here's the link
NBC reporter is right....most people have never heard of it including
me until I was diagnosed. I just asked my doc at an appt last
week if he has any other patients with PMR besides me......he thought
for a minute and said one man that could be off pred but insists
on taking lmg per day just in case. Finding this blog and learning
how other patients handle the disease has been a real plus
for me. I was always wanted to talk to someone that had it but
didn't know how to go about finding that person. Interesting
to get those numbers!!!
Then why oh why haven't you a forum to help you all on the spot???
Surely someone can start one? You all need to know where to get advice/ help quickly, and where the specialists for PMR are.
We can listen over here, but we don't know too much about the American health services.
Good luck with your research.
Constance
I'm pushing 80 and haven't a clue how to start anything.
I'm not terribly computer smart, just enough to get by.
There may be some forums in the U.S. but I haven't
found them.....I'm happy with my GP, been going to
him for l7 years and he initially sent me to Rheumy
to get second opinion but I would rather be under
his care. I think I must be very lucky or blessed, I
have never had the severe pain so many others talk
about. I complained about some pain in groin,
thighs, and butt and my doc noticed I had a hard
time getting up out of chair and that rang a bell with him
Tested me right then for sed rate which was 92. I do
find it helpful to hear other's experiences with this
disease.
That is interesting. In UK they reckon over 400,000 people have it, which means that UK has many more people than the US per percentage of the population.
Hi Ptolemy,
that may be because it is more prevalent in Northern European populations and you likely have more ancestry from there than the US does. Just a thought.
I don't know the stats are for Canada and don't know where I could find out. My GP had only one other patient with PMR and that was years ago. Leonard from this forum is the only one I know of that lives near me.
Thanks for the stats. You've motivated me to look further here.
Have a great weekend,
Diana🌸
I wonder why. They say it is twenty five per cent genetic and seventy five per environmental. It does seem more prevalent amongst us cold blooded lot. My rheumy has a theory that it is catching as it tends to appear in groups. I am not sure if he is right though. I live in a village and my GP reckons that we have more than average with PMR (not that I know any of them) as we have an older average population.
I suppose because this one is so very good!! I found it by looking on the internet.
A short explanation of our healthcare system:
Retirees purchase Medicare as their primary insurance for both hospital and other medical services and can buy a supplemental plan from a private insurance company, in addition that would cover some of the cost that Medicare does not (such as some of the medication)
If you are over 65 and still working, Medicare covers only hospitalization. You either purchase the additional insurance at a discount through your job, or you buy it separately if you have not job. You can also have the coverage through a spouse, who has a job.
If you are under 65, you purchase insurance through your job or you can be on a spouses policy. If you have no job, you can buy it. The options are available online (Thank you Affordable Care Act).
Medicaid is available for persons below a certain income level.
Not all doctors (GPs and Specialists) accept Medicare, as the government does not pay as well as insurance companies. Also, doctors and specialists can choose which insurance companies they wish to work with.
So it is up to us, as patients, to read our Medicare manuals, go online, talk to people, look at our insurance company's list of doctors and specialists to find out who we can see and who we may not. We also call the doctors' offices to find out whether they take Medicare. If it is a rheumatologist it is also a good idea to call to find out what autoimmune disorders they treat.
Hi Ptolemy.
PMR is said to be prevalent among people of northern European/Scandinavia descent. There are many many people of Scandinavian descent in the UK, due to the medieval invasions of both the UK and Ireland. Apparently there is a large cluster of PMR sufferers in Minnesota (here in the US), where a large proportion of the population immigrated to from Scandinavia.
Hi Faye. You do seem to be very lucky with your doctor. I also found my doctor more helpful at first, but my rheumatologist has bucked up and now also looks after me very well. I suppose the rheumy sees so many people who are crippled hobbling into his surgery that he doesn't believe a 'young' 76 year old who walks completely upright is particularly ill. The bloods tell him differently, so now he takes me seriously.😀
You also seem lucky with your pain level. Good for you!
Wow! In England, and also here in Germany, the health systems are very good. A great many people don't have/need private insurance policies.
We used to have private insurance, but when we retired we decided that we could save our money and just joined the public health system. We are VERY satisfied with it.
Thanks for the info!
It is quite inrritating that we cannot find much information or support in the US. I'mso glad this forum is here.
It is quite inrritating that we cannot find much information or support in the US. I'm so glad this forum is here.
This would mean the twenty five per cent genetic part might be correct.
I agree with you....it is irritating not being able to find more information and support here in the US. This forum has helped me greatly!
Prior to diagnosis, in my desperation for finding a cause for my pain, I made an appointment with a Center for Geriatric disease at Johns Hopkins. I figured the doctors there would examine me head to toe, come up with a diagnosis and then I could find an appropriate doctor for me in my area, being able to say what I needed help for. As it happens, they also have a center for Autoimmune disorders and had I known mine was autoimmune, I would have made an appointment there. I am sure a lot of the major medical centers, such as Mayo Clinic and others have these also.
As it happens, I cancelled that appointment, because I found a good rheumy by going to my Insurance Company list and then looking up on the internet all the rheumies on the list to check qualifications and making an appointment with her (still not knowing what I had, and since I had no name for the despicable disease, I could not ask the receptionist if the rheumy treated it). Her website had something called PMR on it and I clicked the link and the description matched exactly what I had.
It is interesting he says that although people think they have pain in their muscles it is the joints that are affected. I am not sure that is one hundred per cent correct.
Hello Jean, yes the link works and I read the article, but I enjoyed myself more watching the "puppy fails" thanks, christina