PMR in the USA: just thought you'd like to know how many we are...

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. 

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.

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.

 

Thanks Lodger,

This is very interesting. Will look them up.

Paula

 

Thanks from me as well Lodger.

I wasn't aware of this survery.

I just completed it!!

Hi Lodger,

Do you know if there is anything at all in Canada?  I was referred to the Arthritis Society but they don't have any helpful info.

Thank you,

Diana🌸

Sorry  Diana

We have looked for other organisations and apart from the Marijke Foundation in the Netherlands. We were not successful.

However, if you look for a Vasculitis Society, there might just be one.

PMR & GCA are linked to the vasculitis range of illnesses, all auto-immune, GCA is the largest one of the group.

 

Thanks Lodger, I did find a vascular site and have sent them an email to see if they can let me kmow of any resources available in Canada. How can such a big country be so uninformed about something that affects so many??? I guess we're big in size but small in population