I've heard of some people who used 'Alloprinol' successfully for PMR

actually Eileen I know at least 4, my landlords father, my daughter's mother in law. My clients mother and mother in law. Only my landlords father has it anywhere near as bad as me but he is 84 yet he still trundles around in his tractor at 5 am checking the cows! We laugh with each other because we both go to bed about 8-30 pm.. cant stay up any longer.... I go and have a cup of tea there sometimes and the pair of us crawling around like quasimodos is quite funny. well not really but you have to keep your sense of humour.

That's amazing - must be something in the water!!!!! 

But actually you are right in that there are sometimes clusters - both geographically and temporally. Our grandparent's generation used to comment on there being places that were renowned for "rheumaticks". Studying such clusters could possibly give indicators for environmental causes - but now people move around so much it makes it more difficult.

I am wondering if the old fashioned acceptance of rheumaticks by our parents wasn't actually PMR undiagnosed. I can remember my mum crippled by it for a few years then it seemed to let up.... She claimed Guinness cured her LOL. My dad had the 'screws' from time to time when he could hardly move and used to sleep in the afternoon so he could manage a trip out in the evening. My auntie was hunched for a couple of years as she struggled to manage but when I remember her I can see the classic PMR stance.

 

I've been saying that for the last 5 years. My maternal grandfather and an aunt on the maternal side both almost certainly had PMR when I think of it. Fifty years ago people accepted being stiff and sore as part of getting older and were "old" in their early 60s, if not earlier. It was also worse in damp. low lying areas - like East Anglia - and it was a Scot who had first described it in 1888 and gave it a name: senile rheumatic gout! I think I do actually prefer the modern name! Thinking of my family members with PMR does give the lie to it burning out in a couple of years - they had it for years and year.

Of course - until the early 1950s there was nothing to be done about it, pred didn't exist. And I'll lay odds that the miracle results in wheelchair bound patients when pred was given to them and they got up and walked were achieved in PMR patients.

Christine, my paternal grandmother died when my father was 14 - all he knew was that she was in a wheelchair.  Her daughter (his sister/my aunt) passed away in America when I was a very young child - all we knew about her passing was that she had lost her eyesight in the previous years.  Little doubt that PMR and GCA are in my genes.

There are two maps of the UK which you can find if you look for

Incidence of diagnosed polymyalgia rheumatica and temporal arteritis in the United Kingdom, 1990–2001

I have seen lately where the highest incidence was in Tunbridge Wells.  Unfortunately I cannot find the link.

At a recent symposium in London on Vasculitis, one of the speakers on GCA, which comes under the vasculitis umbrella, said that the highest incidence is in East Anglia, with it being a bit less common in Scotland and the north west.

One lady who used to post on this forum a few years ago actually had 4 near neighbours with PMR. 

The speaker also referred to a seasonal variation, with peaks seen in May and June. 

It was the seasonal variation that made people think that an infection was to blame - but it just occurred to me that that is the time of year when hayfever strikes so could that upset the immune system as the final link? When I think of it, the first stiffness happened about that time of year but it was quite minor - I usually sleep with my arms above my head and I discovered it was uncomfortable. Then it spread to hips and thighs.

The regional incidence does match the highest incidence of Viking occupation...

Eileen

 "The regional incidence does match the highest incidence of Viking occupation..."

Doesn't it just.  It makes the gene theory sound the strongest.

As for hay fever, I have never suffered from it.  Having said that, I have been sneezing several times daily for very many months now - perhaps I just need to dust the house!   My PMR struck just after Christmas one year, so long before the hay fever season, but just after a nasty stumble;  GCA exactly one year later.  Perhaps those of us with it in our genes (perhaps all) only need any one of a number of triggers to set it off, be it trauma resulting from a fall, severe stress, certain medication, etc

The speaker I referred to earlier said that no clear infectious agent had so far been found to be a trigger for GCA, but that the incidence gets greater the further north in the world you go.  As far as vasculitis is concerned, he said that the strongest link is silica which is present in soil, adding that even that  is not very strong.  So the jury is still out!

 

This makes a lot of sense.... My maternal grandfather Nathaniel came from Ireland but was actually one of the ancient Jewish people who lived there from about 4-500 years ago. I believe many of the female decendants came from Nors women who lived there too. Difficult for immigrants and (in those days) virtual outcasts to find partners from their own kind. My father's family are definitely from Nors origine but I am the only tall blond person appart from him in my family. Everyone else is short and much darker. My husbands family originated in Russia but came to England in 1800's so hopefully my kids wont inherit this horrible thing.

I do know that for years when I had sciatica and what I thought were rheumatics I used to whack my hips and spine with bunches of new nettles... very painfull but the theraputic/pain reducing  effects lasted a good 72 hours and was well worth it. My dad and my granddad used to do this... it was a traditional family remedy. They also used to go and lie on their backs in their pants in the fresh snow for about half an hour... they claimed it 'set them up for the year'. I wonder if some of these old remedies and some genetic theories are connected and would give some insight on many of our problems.

That's interesting about the "snow therapy" - they are investigating the use of cryotherapy for arthritis. Intense cold chambers for just a very short time, -60C for 1 min and -135C for 2 mins is being used for muscle recovery in sports training. 

When I was still skiing regularly I did notice that a morning skiing left me in far less pain than I had been when I got up (no pred) - perfect movement for therapy of stiff hips I thought - but was it actually the cold?

Fascinating story, Christine - I often think that so many of the old remedies are the best.  Good old salt water treatment for certain things, etc.  I wonder if snow contains any salt?!               

Yes well my mother in law used to smack my husbands hands if he ate sweets, she said it would give him worms... having done quite a lot of research reading on the horrible idea of worm thereapy on here recently I found that indeed, eating too much sugar can encourage the growth of worms... Interesting... we allways used to say she was daft!

Not sure if this will pass Alan!! 

http://www.ncbi.nlm.nih.gov/pubmed/16414971

I did try to post a web link to the doc but it hast to pass the 'test' with Alan

 

Passed 

Links to ncbi will always get approved, I am trying to get them on a "whitelist".

Further: I have deleted the copy/paste and "manual" link as the full link is now above.

Thanks Alan - useful bit of research from them

regards, John

John just to say hat was why I did not post the link in my post, just what you should type on the net.

 

From the US National Libary of Medicine:

Both giant-cell arteritis and polymyalgia rheumatica are diseases that affect the elderly, with a peak incidence at the age of 70 to 80 years; age (50 years or older) is considered a criterion for the diagnosis. Women account for 65 to 75% of patients. Polymyalgia rheumatica occurs at a frequency that is 3 to 10 times that of giant-cell arteritis. Disease risk varies according to race and geographic region. The incidence is highest among whites in northern European populations (about 20 cases per 100,000 persons older than 50 years of age); it is lower in southern European populations (about 10 cases per 100,000) and is markedly lower in American populations of Asian or African descent (about 1 case per 100,000). HLA polymorphisms modulate the risk of disease. An onset of disease late in life suggests that environmental exposures influence susceptibility factors; socioeconomic status has no noticeable effect.

I have just posted (on another forum) links to the newspaper article about the 37-year old gentleman in South Wales who died of stroke caused by undiagnosed GCA - proven by the pathologist who did the PM.

Then there is this:

"This link patient.info/forums/di...

isn't quite what you asked - it is a man of 46 with GCA and mentions another man of 49. It includes this statement:

"To quote Anthony Allen MD Chief, Interventional Radiology, Brooke Army Centre US, an Associate Professor of Radiology as recently as 2008; “Although temporal arteritis (giant cell arteritis) occurs almost exclusively in patients older than 50 years, well-documented cases have been reported in patients as young as 40 years“."

Obviously this radiologist has references for patients in their 40s."

and I had two other references:

Giant-cell temporal arteritis in a 17-year-old male

Iraklis I. Pipinos, MDa, Russell Hopp, DOc, Corresponding author contact information, E-mail the corresponding author, William D. Edwards, MDd, Stanley J. Radio, MD

Temporal Arteritis in a 41 Year Old Male: A Case Report and 

Review of Literature

Aileen U. Agbanlog, MD, Charito Cruz-Bermudez, MD

Yes, there are more in over 50s - but it happens in under-50s too and it is being ignored.

You might feel this doesn't fit in here - but someone will use that bit to say "only over-50s", I'm saying that isn't so.

Hi Eileen - The link isnt working comes up with 'Not Found'?  Can you re send - thanks

How bizarre - does this?

https://patient.info/forums/discuss/gca-at-46-my-story-32212

Post is by Jonathon Gatsby as Gatsby125 and the thread is "GCA at 46 - my story" int he PMR forum.

OK this one worked alright - thanks,  Interesting story.