Does anyone doubt they have the right diagnosis of PMR

Mariane, where did you find the stat for Canada?  A site I looked at indicates prevalence of PMR roughly same as in UK (population twice as high, number of diagnosed cases also twice as high).  Although these stats are all extrapolations and may be highly inaccurate. 

I wondered about this too.   What I read when I was first diagnosed was that it was very common and generally found in females of N. European extraction.  I am in the U.S.  I would think that our population here would be about the same as Canadas based upon ethnicity.  Just curious.  I coudn't find a stat on that either.  My findings also were average age of 65, which when you go on either side of that you are going to find some in their fifties, perhaps younger, and some in their 80s or more.  

The site I found was extrapolating stats from USA information, so actually when I looked at it some more it was rather useless.  As both Canada and the USA have very large non-European populations you would expect them to have a lower incidence than Northern European countries.  Also I have a bit of a theory that the incidence may also be lower in counries with more sun year round.  It would be interesting to know if northern Europeans in southern climes are equally at risk, or whether they in fact have a lower incidence.  I do know, for example, that the incidence of MS is very high in Canada compared to other places, and particularly in the east.  That would almost imply an infectious agent of some sort, wouldn't it?  Perhaps a lot of these auto-immune and inflammatory conditions are going to turn out to have some sort of bacterial or viral cause at the root, with certain populations, whether genetically or environmentally, more at risk.

You are posing some very interestign threories, yes, the U.S. has many many ethnic groups.  I happen to have Swedish, Irish, English, and Scottish in my background.  I do live in a sunbelt area in S. California.  I am careful in the sun now, but as a teen I was a sun worshipper at the beach and always vety tan.  I have wondered about injury triggering mine.  My rheumatologist said in my case it is possible.  I had a very bad fall just a couple of weeks before the onset.  I tripped carrying some things and landed on all fours.  I literally felt the muscles in my back being jarred.  I ahd never had that sensation before.  X-rays showed no fractures, however, I do have a tear in the left shoulder rotaor cuff.  A cortisone shot really took care of that, howver, I am expecting that pain to return.  On my last visit to my primary, just last week, the blood work he ordered showed that I do have some sort of low grade viral infection.  I feel totally fine.  I am pretty much pain free now.  I have not started to reduce my pred yet.  I am still on 20 mg.  I had put a call into my rheumatologist on Monday requesting either a 1 mg or 2 mg prescription so that I could begin reduding My tabs now are 10 mg.  I can cut them in half, but it would be very difficult to be accurate in further cutting those.  I am annoyed that he has not returned my call, but I have been busy and remiss in calling him back too.  You are a wealth of information, I appreciate all that you do for all of us.  Yes, my bookmarks are also growing. LOL

I don't think I really have very much information - no more than anyone who's had this condition and been on these forums for a few months.   But I do tend to ask an awful lot of questions and wonder about things.  I must have driven adults in my life nuts when I was a child!

Enter, Polymyalgia Rheumatica+Vikings in your search engine.  There is a weath of information  and Caucasian (white) people are most the susceptible.

So blame those Vikings - some of whom where probably ancestors as I live in the North East but our family records don't go that far back

I

I am sure that the adults in your life loved your inquisitive mind.  I am a retire teacher, and I just loved the questioning minds of my students.  

Also responsible for at least some of the rh negative blood carriers in the population.

Oh, my gosh, that's me too.  I am Rh negative.  Interesting.

Hi Anhaga,

Do you mean that Scandinavian/Viking ancestry may be responsible for negative Rh factor?

I am A negative.

If there are Vikings in my background, and there well may be, it does not show up on my DNA test that I did.  I am 99% Eastern European. I wonder whether minute traces of DNA show up on these tests. 

Thanks. My stiffness and pain have disappeared and does not return in the evening. I did have a bone scan done recently. However I am not taking any vitamins. I go back to see specialist in 3 weeks so I imagine he will begin lowering my dose then.

Hi Anhaga

Im sorry but i read all this about a year ago when first diagnosed that it was mainly a European disease etc etc......

Im Ukrainian ancestry so not typical.

It's just like i read a study staying that the vitamin d we get from the sun washes off as soon as we have a shower if done before 24 hours.

I read this recently so still maybe able to locate it. Love the brain fog

Mariane

I think that most, not all, rh negative does trace to Scandinavian area, but I'm no geneticist and may be remembering the info I picked up years ago incorrectly.  I do have a bit of a magpie mind which attracts odd factoids.  

I've just spent a few minutes looking that up.  The most authoritative answer I could find, from the Vitamin D council, indicates that this may be a myth started as a response to instructions from manufacturers of self-tanning products to wait a certain length of time before getting into water.  Vitamin D, apparently, is converted lower in the skin, not in the upper layer, which is what would be affected by swimming or showering.

I've found this, gives the US rate:

"Polymyalgia rheumatica is a rare disorder that affects twice as many females as males. Affected individuals are usually over the age of 50 years. This disorder occurs at the rate of about 50 per 100,000 in people over 50 years of age. Polymyalgia rheumatica is estimated to affect 450,000 individuals in the United States."

It is a site called national organization for rare disorders.  Which I find interesting as it's not rare.  I've read elsewhere that it's one of the most common disorders in the senior age bracket.  One wonders where they got the stats, on the other hand the US has a very high black and hispanic population which could lower the incidence.

 

Hi Anhaga

From what i can remember it is rarer in north America (Canada, USA) vs. England, Europe. As I'm sure you've noticed all or most of the info comes from the UK. In the UK they recognize it as a disability here I'm hiring a lawyer and fighting with my LTD and pension. They think once one prednisone your just a ok.

I have 2 friends who work with didability claims and both never heard of it and one just retired and the other about to so many years in the industry.

Thanks for looming things up.

Mariane

On the (Canadian) arthritis society site this is what they say:

Polymyalgia rheumatica predominantly affects individuals over the age of 50. Giant cell arteritis affects men and women over the age of 50 who may or may not have polymyalgia rheumatica. The incidence of PMR is 1:133 people over the age of 50 with peak incidence between ages 70-80. Giant cell arteritis affects 17 pts/100,000 individuals over age 50.

Very interesting then if so why doesnt the government of Canada recognize it as a long term disability unlike England.

If so predominant in Canada and according to those stats we should have groups like the UK. It's a shame.

I've been trying to find what you found and can't. Can you send me the link please.

I've heard that there used to be active groups.  The arthritis associations/societies seem to have links to chat forums, but they seem pretty inactive, at least they were when I checked many months ago.  Thing is, Patient was started by doctors, I've been told.  Covers many many more diseases than PMR?GCA.  Recent efforts to start a Canadian group have been rather unsuccessful, as you know  There simply isn't the critical mass of people we need involved at this point, and with all the funding cuts the arthritis society etc can't help.

We only had two groups (run by Volunteers) 9 years ago. One in East Anglia and one in Scotland.

Then 5 people met on this website and decided to change that situation, it took one Professor and 25 people with PMR & GCA to start up a National Charity and now we have 3 charitable organisations, a one which covers England, NI and Wales, a Scottish Charity (different NHS service) and one located in the North East of England and just over 14 support groups who all work together and all run by Volunteers.

Did we have money, did we heck and we still run on shoe strings. However we have raised the profile, Research has increased and support has increased. From little acorns - oak trees grow - it just takes a long time. 

So get cracking, it can be done.  OK the UK is small, but what is distance when we can communicate so freely.

 

Already met one other suffer and we are talking about it. My rumi won't post a flyer but his may.

We are meeting again so i may post on this site wbo may be interested to get together in the GTA Toronto

Mariane

We had some free cards printed and found out the Rheumy's would hand these out  - it may just work for you.