What if they never find the underlying cause for PMR?

[vnett]

How often is the underlying cause never found? How many tests can they do in search of why?

[GOOD_GRIEF]

Well, here's the thing. They can only find what they're looking for. Right now, it seems nothing they know about is "the cause". Pretty soon, they'll start looking for things they don't know about.

We do that by finding inconsistencies between the PMR/GCA population and the rest of the population, and looking for identifying markers whether genetic, environmental, chemical etc.

Someday, "the cause" will be identified. We'll all be better by then. But future victims will benefit from our experience and the information we provide to researchers.

So if you can contribute anything to a study, it's a good thing to do. I'm looking for one in the US where I can participate, not because I expect anything to come of it for myself, but for the next generation.

[DorsetLady PMRGCAuk volunteer]

Hi,

Very good question, the answer to day is probably never, although we all have our own ideas...and stress (mental, physical, psychological) are all favourites.

This is from one Arthritis site (but all say much the same) -

“Polymyalgia rheumatica (PMR) is an inflammatory disorder typically seen in older adults that causes widespread aching, stiffness and flu-like symptoms. It is more common in women than men, and is seen more often in Caucasians than any other race. The average age of onset is 70 years, and it is rarely seen in people younger than 50. PMR is a self-limiting condition, lasting from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis (also known as temporal arteritis).

The cause of PMR is uncertain but it is believed to be an autoimmune disease in which the body’s own immune system attacks the connective tissues. Genetic and environmental factors (such as infections) are thought to play important roles. Because it is rare in people under age 50, its cause could be linked to the aging process.”

There is no test for PMR per se, it’s usually diagnosed by its symptoms, and after other illnesses have been disproved.

Sure PMRpro will be along with a more comprehensive and scientific answer idc.

[vnett in reply to DorsetLady]

So my GP has already ruled out numerous autoimmune diseases and still says to me he does not thinks it’s PMR. I see the rheumatologist tomorrow with the latest tests results and she will confer with my GP. I’m very nervous. I’ve been rapidly up and down with the prednisone dosing with wonderful then disastrous results. I’m just going to muster up a little more patience and give the new doctor the benefit of the doubt.

[DorsetLady PMRGCAuk volunteer in reply to vnett]

Well yes, you are seeing a specialist - so hopefully she will confirm whether she thinks it PMR. However, if it’s not obvious to her she may ask for extra tests - one never knows! But I do hope you get a definitive answer sooner rather than later.

[PMRpro Ambassador]

The PMR we talk about here is an autoimmune vasculitis - related to GCA. That means something has upset the immune system and confused it so it attacks your body in error as if it were "foreign". All sorts of things can stress the immune system - and no single thing can be given the blame. But the same applies for almost all autoimmune disease.

If the symptoms are due to something else that should be identified in the work-up at the start - and most of the other causes would not respond at all or as well to pred.

[Hidden in reply to PMRpro]

Hmmmmm? You have me wondering....

[jinasc]

Neither PMR or GCA are listed in the following: I have often wondered why. Now Vasculitis is listed and as GCA is classed as a member of that family, it cannot be that rare or can it? Or have I missed it somewhere. Perhaps nobody told them......................

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 792 rare disease patient organisations from 69 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. eurordis.org,

About Rare Diseases You can read more on this link: eurordis.org/about-rare-dis...

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000.

There are more than 6000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens. 80% of rare diseases are of genetic origin, and are often chronic and life-threatening.

Just thought I would share this with you all........and if you find anything at all, please let us know.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hi Hel,

I found this when browsing through trying to ascertain how rare is rare!

Not sure I ever saw sharks teeth or white clouds, and there are certainly more than 8 things certain doctors don’t know about GCA -

Freyja,

roche.com/research_and_deve...

[jinasc in reply to DorsetLady]

Freya

I have a photo, (wish I knew how to put it on here), of Bhaskhar at a meeting at which he brought with him a blown up slide of a picture (circa 15th Century of a Cardinal et al) to go with his lecture. He told the audience that this Italian Oil Painting shows the classic visual symptoms of GCA.

Our ancestors did get around a lot...........

Hel.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hel,

Yep they sure did!

Unfortunately the only time you can add a photo is when you write a post ...you could always do that!

Freyja

[jinasc in reply to DorsetLady]

Moi! write a post................I only try and answer................one day perhaps?

[PMRpro Ambassador in reply to jinasc]

Is it this one?

en.wikipedia.org/wiki/Virgi...

Look further down the article and you will see a detail of the guy's face.

[jinasc]

Yes, that is it. When Bhaskhar brought it, I remembered I had seen it in Bruges years before but did not remember it was by Jan Van Eyck Flemish painter not Italian, the Italian bit must have stuck from the picture.

I might have known it would stick in your mind from that day in May 2008.

I love how something not connected can trigger off a memory.