Causes of PMR?

[Steve2002]

I ran into an old friend yesterday and was surprised to hear that he also has had RMR. He told me about another mutual friend of ours in the same boat. My two friends are both male as am I. One is Italian and the other Ashkenazim Jewish. From what I've read about this condition, it almost exclusively afflicts women and those of Northern European descent. Is this genetic link to causation of PMR still accepted? My two friends and I spent a lot of time together in the 70s and 80s, so this has me wondering about a common microbe that may have infected us. The odds against the three of us getting PMR according to conventional wisdom about the condition seem so great as to be practically impossible. What do you think?

[SheffieldJane]

How interesting this is Steve2002, I have been pondering personality types in a non academic way. Sufferers seem to me to be the kind of people who put others before themselves and almost have to be felled by an illness of this type before they stop.

There are quite a number of men on here, although women are the vocal majority. I hadn't heard of the genetic link before your post. I'm not sure that the pace of modern life suits any human being deep down though. No time to stop and stare.

[Emilytom52 in reply to SheffieldJane]

How sooo true " no time to stop and stare ". I am trying but it's hard and seems unnatural Thank you. For reminding me. Xx 💐

[PMRpro Ambassador]

No - those aren't exclusions, they are factors that increase the risk. The incidence decreases as you work your way south - but it does still appear. There is also some thought that there are different forms of PMR. Given the things doctors have claimed about PMR in the past that have become received wisdoms but which we on the forums would dispute - maybe the Scandinavian gene pool predisposes to one sort more than others and that is why they think it lasts a couple of years and only appears in older patients etc etc!

It isn't particularly uncommon here in Italy - I don't have to explain it to anyone here which is a bit different from the UK! One of the top world names in PMR/GCA these days is from just down the road from me and one of the top researchers historically is Italian - if there weren't patients they wouldn't be interested would they? There was a lot of migration throughout Europe - Germans and French especially spent a lot of time in Italy a few hundred years ago. Genes will have mixed. And the Vikings got all over the place!

It isn't "almost exclusively women" either - the ratio is about 2.5 to 1, so at least 25% of patients will be male. The first person I can remember I would identify as having had PMR was my grandfather.

They have shown clusters of PMR developing - both spatially and temporally. That suggests there may be an infective element involved in it - but they haven't identified anything yet that is common to everyone/every place. There were large communities of Ashkenazi Jews in Central and Eastern Europe - there are some suggestions that vit D may play a role and that may be the "northern European" link. There may also be something in exposure to certain environments.

And what is it about each of us only being 7 moves away from being related to everyone else or everyone is related if you go back 1000 years - which means a gene pool that is pretty common if you think about it.

[DorsetLady PMRGCAuk volunteer]

Hi Steve2002,

I think there is still very little known about PMR, so lots of these preconceived ideas remain.

Maybe in the past more women went to their doctors with their problems than mem (who are more reluctant in many cases to seek medical advice), or maybe because they have a habit of living longer and therefore more susceptible to suffering from it.

The Northern European link has a little more credence, but as PMRpro says people have always emigrated to other parts of the world. We have quite a few North American and Antipodean members which would corroborate that theory, but as far as I'm aware it's not that well known in Africa or Asia.

Sure I will be corrected if that's wrong.

As SheffieldJane says most of our contributors are ladies, but it's nice to get a male perspective on things, so please add your advice and experience whenever you feel inclined. And tell your friends about us.

[PMRpro Ambassador in reply to DorsetLady]

There is a Chinese (I think) guy who lives in Japan on the patient forum! I suspect he may be mixed race though. You can't really ask can you - that would be rude! There was a black lady in the US too - but also mixed race. So you have no idea really what gene pool is there.

But there are so many aspects: there is very little RA in the Indian subcontinent. People move to the UK and develop RA - which goes into remission when they go back. They don't usually change their diet that much - so what can you blame? The weather?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Why not! We Brits usually do! Gorgeous sunny day here today, but a bit nippy round the extremities!

As for the gene pool - the British Isles have always been a mixture - where else do you get a redhead with grey/green eyes marrying a brunette with blue eyes. Load of mongrels aren't we!

[PMRpro Ambassador in reply to DorsetLady]

- 8C here this morning, struggled up to +2C. Glorious sunshine though and a beautiful sunset. Same again tomorrow!

[nickm001 in reply to PMRpro]

Maybe talking about me? I do live in Japan ( wife is Japanese) but I am European decent - from Belgrade, previously known as Yugoslavia. So I would be part of southern Europe, similar latitude as Italy. Talking about mixed gens, here in Japan people that are mixed are called "hafu", which is derived from English word "half". Unlike England, which is quite mixed, population in Japan is mostly 98%+ Japanese, although it is changing in the last 15-20 years.

[DorsetLady PMRGCAuk volunteer in reply to nickm001]

Yes - even the so called original British are not a pure race - mixture of angles celts, vikings, gauls, saxons and have been for a millennium!

And we talk about diversity as if it's something new! As the saying goes -vive la difference.

[PMRpro Ambassador in reply to nickm001]

Thank you for satisfying my curiosity!

[Steve2002 in reply to nickm001]

nickm001, do you have any idea what the incidence of PMR is among Japanese people?

[nickm001 in reply to Steve2002]

I don't have any actual statistics, but it is less common then in European population. I do know that my PT office was familiar with it and had treated PMR patients before. Healthcare is excellent and I had relatively quick wait (less then a month) between first PMR symptoms and actual diagnosis.

[podo]

I too wonder about an infectious cause. At one time, Lymes disease was mentioned as being linked, I have had a number of Tick bites over the years. It would be interesting to know how many sufferers have had these?

[PMRpro Ambassador in reply to podo]

The general consensus is that it is not AN infection - but infection will have contributed to overloading the immune system as part of a cascade leading to it going haywire. It's not so likely to have been tick bites in the UK - them being infected is a relatively new development.

[cdenoncourt]

I lived for half my life in the area where Lymes disease first appeared and so I was tested for it on 2 different occasions. Tests were negative and my diagnosis was PMR increased to GCA within a year. So Lymes disease was not a factor for me but I still got PMR GCA. That doesn't prove anything except how hard it is to find a causal link no matter how our minds strive to find one.

[Steve2002]

Thanks to everyone for sharing your views on this question of cause. And thanks in general. This forum is a gold mine of info. My GP and Rheumy are both very good, but they don't have time to get into the kind of detail with me that is available here.

[DorsetLady PMRGCAuk volunteer in reply to Steve2002]

Hi again Steve,

No they don't have the time, nor do they have the insight of fellow patients. We all have similar, but slightly different, symptoms and effects from Pred, and inevitably different ways of dealing with them. What helps one may not help another, but at least if you know - you can try!

Why would any of us want a mundane boring illness when you can have what we do!

[SusanEleven]

I've seen a few discussions of seasonal clusters of PMR, leading to questions of a viral trigger. If I come across anything interesting I'll post it. I did see a rather old report on the National Institutes of Health site that looked at cases in the UK. "Incidence of diagnosed polymyalgia rheumatica and temporal arteritis in the United Kingdom, 1990–2001"

Interesting stuff as they mention a possible geographic pattern in the UK. "Both PMR and TA were more common in the south than in the north of the UK, and both were more commonly diagnosed in the summer months." And "The explanation for the findings is unclear. Variations in diagnostic practice and accuracy are likely to have contributed in part to the patterns seen. However, the findings are also likely to reflect, at least in part, variations in the incidence of disease. The striking geographical pattern may be partly attributable to a risk factor which is more prevalent in the south and east of the United Kingdom."

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to SusanEleven]

I can't find it now but there was something about GCA diagnoses peaking shortly after peaks of solar activity - both approx. 10 year cycles.

[Hidden]

mgord02

I have had PMR for 14 months and now my partner has been diagnosed with it. I know it is not contagious, but does seem strange.

We both live in the Scottish Highlands, had many tick bites but no Lymes Disease. We both have many friends who suffer or did suffer PMR.

I follow this forum closely it is a great source of information, and advice always so much better when given from people who have been there and give us first hand facts.

[zorroaster]

After 3 1/2 years of PMR and now hovering around 1/2 mg pred I have had plenty of time to ponder why I got it and where it came from. I notice that I always feel better when its sunny, the cold weather has definitely brought on the aches, but is it cold temperatures or sun and vitamin D? Another thing I wonder is whether 2 years of Tamoxifen, which I hated, after breast cancer in the late 90s messed up my adrenal system. Unlikely to explain male PMR! But has anyone heard of links between Tamoxifen and PMR?

I always return here when the aches return, thanks for good advice over the years.

[Steve2002 in reply to zorroaster]

Was your Vitamin D very low when the PMR hit? Mine was, and it does seem like there must be some connection.

[PMRpro Ambassador in reply to Steve2002]

Low vit D is commonly found in patients with autoimmune disorders - what isn't know is whether it is cause or effect. A study in Finland found that if you gave newborns a vit D supplement, the rate of Type 1 diabetes in teenage was reduced a lot (Type 1 diabetes is an autoimmune disorder and it is very common in Finland). So that would suggest that vit D may have a causative role. It would take a long time to establish a similar link for PMR though.

[PMRpro Ambassador in reply to zorroaster]

Your adrenal glands have nothing to do with PMR (or the other way round). There has been the occasional person who has mooted adrenal insufficiency as a cause but as yet nothing has been found that would confirm it. It's is almost certainly a whole gamut of things and then choose any 67 from 403 items!

But there is possibly a role for hormones for some people somewhere along the line...

[kulina]

I live in Massachusetts, US, and so far I haven't found anyone else who has PMR. Most people don't know what it is, nor truly understand it once I tell them. As far as my condition, I swear it was brought on by stress. My father died last year and besides grieving for his loss, there were major stressful issues in the family and four months later I got diagnosed with PMR. Immune system compromised by stress? I guess anything is possible.

[Steve2002 in reply to kulina]

Sorry to hear about your father. Actually, I lost mine about a year before I came down with this condition. I think stress is a factor in almost all physical illness, but exactly how it works is the question. Good luck to you.

[PMRpro Ambassador in reply to Steve2002]

Stress alone doesn't normally result in illnesses - but it does upset the immune system. So do other "stressors" in the form of infections and allergens. Take them all together and in some people the immune system eventually experiences the straw that breaks the camels back and it goes haywire. Emotional or psychological stress may be that straw which sends the immune system from fairly healthy and balanced to causing an autoimmune disorder.

If you want a long heavy read: ncbi.nlm.nih.gov/pmc/articl...

where they say:

"However, the flexibility of the immune system can be compromised by age and disease. As humans age, the immune system becomes senescent (Boucher et al., 1998; Wikby, Johansson, Ferguson, & Olsson, 1994). As a consequence, older adults are less able to respond to vaccines and mount cellular immune responses, which in turn may contribute to early mortality (Ferguson, Wikby, Maxson, Olsson, & Johansson, 1995; Wayne, Rhyne, Garry, & Goodwin, 1990). The decreased ability of the immune system to respond to stimulation is one indicator of its loss of flexibility.

Loss of self-regulation is also characteristic of disease states. In autoimmune disease, for example, the immune system treats self-tissue as an invader, attacking it and causing pathology such as multiple sclerosis, rheumatoid arthritis, Crohn’s disease, and lupus. Immune reactions can also be exaggerated and pathological, as in asthma, and suggest loss of self-regulation. Finally, infection with HIV progressively incapacitates T-helper cells, leading to loss of the regulation usually provided by these cells. Although each of these diseases has distinct clinical consequences, the change in the immune system from flexible and balanced to inflexible and unbalanced suggests increased vulnerability to stress-related immune dysregulation; furthermore, dysregulation in the presence of disease may have clinical consequences (e.g., Bower, Kemeny, Taylor, & Fahey, 1998)."