I recognise that this will be of little interest to most but I wondered if there had been any research into which groups were more prone to PMR than others. The reason I ask is because I and 3 friends have all enjoyed a full career in the (British) Army and are all now in our late 60s/early 70s. All of us have been fit, healthy and active over - at least - 35 years (ages 20-55) and all of us have contracted PMR. One has just tapered off Pred, 2 of us are stuck around 2mg and one has just been started on 15mg.
Can you point me at any research that might suggest why we might be more susceptible to PMR than other groups - or is it just coincidence?
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I'd think it is probably to a great extent coincidence although some factors are chemical or environmental and that in itself must provide some food for thought,
I had a rheumatologist who maintained that PMR was prevalent in ‘clusters’. I don’t know where he got the information from, but he seemed to think it was true.
thanks Piglette . Now I’m looking for the chemical and environmental factors that we shared. At the moment it’s only diesel; we were all on tanks for years, living, eating, sleeping diesel fumes.
I find epidemiology fascinating and it was a side interest of mine during my working career. Don't forget that you were all eating the same diet then and would likely have had the same vaccinations, just for example. And there is also the possibility that multiple factors play a part to create the perfect storm. Do any of you have combat PTSD, for e.g.? Also there can be an association that is not necessarily causative and the underlying link can be an artefact. I have my own suspicions about it, but haven't had enough energy to go through the literature yet.
Diet is interesting, too. I know we all had a pretty high alcohol intake in our 20s and 30s. PTSD is not a factor but we are all 'worriers' and constantly looking over the horizon, doing the 'what if?' to see what potential risks are coming to bite us
ha yes, pretty sure my wine intake had some bearing on it!
I've always had what I would term a fairly healthy diet and I don't have a sweet tooth, so I don't think it was causative for me, but I am certainly extremely sensitive to certain foods now and if my diet lapses, I suffer. I have learned that foods with added sugar are poison for me or too many carbs in a day, alcohol in moderation much less so, and the other one is high carb fried snacks like crisps and corn snacks. Anything that will cause my blood sugar to spike . The anti inflamm diet is a whole topic in itself.
But where I was going with the diet when I mentioned it was that it could fall into the environmental factor, e.g. highly processed perhaps. It must be quite hard to provide healthy food that is mass catered and easy to transport.
And chronic high levels of anxiety are not considered good for the body, whatever the cause. Yes, there was an element of the "what if" that you describe to my job. A portion of my job was compliance, and it was my job to make sure that we weren't doing anything that would come back and bite the company. So, not only did I have to avoid my own transgressions, but I had to keep an eye on everybody else too.
Diet is certainly a factor. The rations were composite (known as 'Compo, obv)' and packed full of carbs. An oatmeal block with processed cheese and jam at 4am was pure nectar. But, seriously, it is a common factor among my group, thank you.
Totally agree you can't undo what's happened. The 'What if' exercise is to try and stop it happening in the first place. It can be all-consuming sometimes and is a product of training. But I do like the saying: 'One day you'll look back and realise that you worried too much about things that don't really matter'. Now I constantly try to keep that refrain in my head
It’s true - there is no point in worrying about rubbish.
I lost my hubby 10 years ago (after quite a few years of coronary issues, some certainly as a result of military lifestyle) -and a year after me losing sight in one eye to undiagnosed GCA.
Both our illnesses and his death certainly makes you re-evaluate what is worth caring about… and what isn’t!
I've been wondering about the chemical aspect myself. There is research showing a high rate of PMR in Olmsted County, Minnesota. My first thought was, "sure, that's where Mayo Clinic is." Surely, a great deal of research is done by this famous facility and the concentration of research was Olmsted County, so possibly results are skewed. Mayo Clinic also suggests that PMR is more prevalent among Scandinavians. Swedish and Norwegian ancestors chose to settle in Minnesota (and also in nearby Wisconsin). Their occupation was farming. As "progress" took place, the use of fertilizers and crop sprays were used by farmers. My brother had PMR in 2009 and I had PMR in 2010 -- both successfully treated! My brother had more exposure to crop sprays than I. (Incidentally, he developed Parkinson's about 10 years after the PMR). Our ancestry is predominantly central Europe and about 1/5 Scandinavian. I now have to wonder if my mom's complaints of "rheumatism" was actually undiagnosed PMR.
When there is a "cluster" of men with this diagnosis, suspicions are definitely raised about the implication of chemical and environmental. I was suspicious that the PMR of my brother and me had a genetic influence. Maybe the greater impact is environmental. Research may be lacking because the medical community has not taken PMR seriously enough. Also, pharmaceutical companies may believe there is not enough money to be made from this fairly uncommon diagnosis.
My bilateral upper body pain in April 2023 told me these were the same symptoms I was successfully treated for in 2010. Now on that miracle drug: Prednisone.
That’s absolutely fascinating to learn and bears out a lot of previous speculation, thank you. I’m being slightly overwhelmed by what I thought would be an unnoticed remark in the sidelines, so apologies for the slow response
Although I'm from Canada at one point in time myself and a woman from the USA started a forum like this.In speaking with everyone we all seemed like type A personalities as well went through a period of stress prior to diagnosis. Of course exceptions but we found it interesting.
The forum is long gone but I continue to meet individuals and continue to ask and it's holding up.
I also believe genetic disposition since I have several cousins with it.
This is my second bout of PMR (first one was 2010-2011). My current bout was preceded by two years of some chronic stress, which was precipitated by several months of acute stress. During the phase of acute stress, my adrenals must have been severely taxed. However, there seems to be a common consensus that stress is not a precipitator for PMR.
Wizards, sorry for the misunderstanding. I agree with you! I think stress is a huge factor in PMR (and probably in a number of other maladies). I think my post was confusing because I also was trying to say that others disagree that stress has much involvement. I think it's safe to say that stress alone may not cause PMR (as we read about possible genetic impact, chemicals in environments, etc.) Stress may be the straw that broke the camel's back.
I totally agree about the straw. I know for me it was.As I've said it forced me from an A personality type to become a B and sometimes a couch potato when I've done to much.
Did you all come from a similar geographical area initially?
Many regiments (whichever Corps you are in) have specific recruiting areas.., think that’s were you need to start researching rather than blaming living in a tank and breathing in diesel fumes…😊
thanks, that’s a thought. Although we all originate from different regions there were certain places where we all came together whether for training or other reasons. All these replies are very helpful. I originally wondered whether the very active nature of our career was noteworthy. All 4 of us were above average sportsmen with, again, common ground in some areas.
Lots of food for thought which may prove nothing but it will be fun trying.
I believe you have hit the nail on the head there. So many people start out on this forum by saying they are fit and active, I have come to believe that PMR often follows and often interrupts a busy life.
Likewise, but only after the inflammation that had accumulated before correct diagnosis was finally brought under control. But it does require a change in mindset and expectations, especially being unable to plan the outcome of physical and even mental challenges.
Your training in the Army may have taught you to overcome a lot of those aspects of PMR but my experience is that it still likes to throw in the odd curved ball and wreck your plans for the day.
I don't know what to believe but I did say indignantly to my GP when I was first diagnosed in 1999 aged 67 that I thought I was a rotten advertisement for a healthy lifestyle. He was sympathetic but said he didn't think there was any connection between life style and PMR.
Re genetic connection, my mother and one of my two sisters had/have PMR. but that doesn't prove anything, I know.
Officially I have been in remission for ten years now but I'm not sure I believe that, either. Doctors seem to prefer to attribute my aches and pains ( neck, shoulders and thighs ) to old age!
My father had it so when mine started this year I knew exactly what it was. Funny that in the DNA analyticals, RA and many other genetic autoimmune conditions have specific DNA markers but there is nothing related to PMR.
My father and I both share British, Scottish, Welsh and Scandinavian genes, according to Ancestry DNA, I did not inherit much of my mother's ethnicities. Ancestry can tell you that without even testing your parents!
With the baby boomers hitting 70, I expect more attention will be paid to PMR in the coming decade and possibly we will get some better answers.
I doubt it until it has a financial effect because there are enough patients with it needing to work but either requiring a lot of accommodation or unable to work at all!
Over the years, I think I've heard some possible themes on the group here:
Viking blood (I kid you not)
Active lifestyle (before getting sick)
Major stressors (that brought on the illness)
Age (of course)
Any others? Doesn't need to be proven in a medical journal. Just interested in possibilities - maybe things that might not come in the surgery, but that we might notice among ourselves
I can certainly think of a lot of ‘…blue-eyed, fair-haired, like to travel, adventurous, have a tendency to be a bit bossy, think you could/should rule the world…’ people in my former profession lol
No kidding about the Viking blood - the presence of Scandinavian genes increases the likelihood of developing PMR and a lot of research has been done on the population of Olmsted County in Minnesota which is where many Scandinavians settled in the USA
So if we looked in Scandinavian countries we would see a higher prevalence of autoimmune diseases than in some others? Interesting, it sounds plausible; I shall do that.
I've only ever been moderately active. Definitely Viking-type though (tall, pale & red-headed). My PMR arrived v suddenly. It was just after my first flu jab, which may have been a jab too far for my immune system. Who knows? 2 years on & stuck on 3mg pred with some afib as a bonus.
Interesting! My very first flu shot preceded my diagnosis of PMR. Through the years, I was never impressed with flu shots preventing flu, so I had avoided them.
I think this is a very interesting suggestion. We are certainly seeing clusters of rare cancers in certain units of the army. I know of research being done on this. Nothing on autoimmune disease...but the army doesn't release this sort of medical info or follow up after people have left the army. You need to set up a group for ex-army personnel with autoimmune diseases and then find an epidemiologist to research the group. It is being done for a cancer.
On that basis - NHS staff who worked in London in the 70s might be an interesting cohort too. Not sure about other places but we had a load of jabs because of the risks of nasties entering the hospital because of patients from the docks.
That is an interesting thought. Spent my childhood in India, forever being inoculated for something or other. Not to mention regular spraying of yard and house with DDT. Have I saved all this up for PMR in later later life - I wonder xx
Now that is a very interesting thought. The Army ensured that we were jabbed up to the hilt because of the need to be prepared to go anywhere. All sorts of things - gamma globulin being one of the more interesting ones
Hi. Five of us (all male golfers over 65 years old in the same society of about 60) contracted PMR within 18 months of eachother. We all think ( and I am convinced ) that it was related to the COVID vaccination (I think that this has been recognised as a side effect but others may be to confirm). Other than we have played golf for over 20 years we have no other contact and are a very disparate group.
I suppose the vaccination may have contributed but there seem potentially to be other similarities among your group - active, outgoing, ageing well (other than the obvious).
Too much of a coincidence for me. Nobody had even heard of PMR before the first victim (me) and as I said we have all been playing for many years. To go from none in twenty odd years to five within 18 months after the vaccinations commenced, it has to be connected.
I wondered at the time wether it was the flu jab, 65 and months later started with PMR 9 years now and not a bit of help from doctors, I fluctuate from 21/2 to 2mg and pain killers
I am convinced it was the COVID jab, as I had my first jab in March 2001 and PMR was diagnosed in July, having crept up on me during those months. I too was fit and well and active before PMR struck. Down to 1.5mg now. My activity levels have dropped remarkably in the meantime, sadly.
I have joined a Joint Pain course at the Nuffield which has been a godsend. I only heard about it through this group, so it is yet another benefit to joining.
I was convinced it was environmental until the East Coast clusteres were explained as ‘Viking’ which seems incredibly at this age of mobility. I think seasonality plays a part and I’m sure Covid and it’s vaccinations do. Also stress. Are there many more of us affected today? Or is it like being pregnant - you don’t notice others until you are too?
Are there many more of us affected today? Or is it like being pregnant - you don’t notice others until you are too?
second part of second sentence - very likely.... most people don't know anything about it, until they have it, so why would they know if others have it.
Whilst not being blue eyed blond etc I do fit the highly active aging well adventurous category suddenly poleaxed by PMR/GCA after the covid vaccine!! Interesting. And stayed active give or take despite illness. Its Interesting......
I think probably because the PMR was misdiagnosed as long covid so was not given steriods and in fact still being treated without them .....so I didn't have steroid side affects to deal with!!
I believe that stress can play a part too in triggering PMR. I’ve not done the research but many on here talk about life changing events beforehand - including bereavement, work related stress, divorce etc These lower the immune system, and I had a flu like episode before PMR was diagnosed. Just one more thought to enter into the mix. It’s just anecdotal.
Definitely stress in my case, diagnosed before any covid inoculations, but after some lockdowns etc., But in close proximity to one causing me a lot of stress and still doing so. Grew up in a healthy environment abroad and live in one here now. Previously was just moderately active and always have been. None of the other criteria, smoking obesity etc apply to me.
I think multiple factors for me. I'm another with an active, athletic, adventurous, well travelled, highly motivated, responsible stressful job lifestyle. I cycled, ran, swam and my passion was high altitude trekking. My travel meant that I had lots of vaccinations and malaria prophylaxis. I have no idea if I am viking, (south east england, short and round, green eyed, fair with reddish blondish hair), probably not. I suspect a susceptibility in that I come from an atopic family, probable celiac, borderline underactive thyroid, have been prediabetic, so some possible autoimmune activity already going on there. I also have cPTSD and in a high pressure work environment working with other high achievers, I was constantly triggered, so I have been exposed to way too much cortisol through my life. I also liked a drink, which became a form of self medication for stress, which I guess may be contributory. I have a long history of musculoskeletal issues, so it is hard for me to figure when it all first started. The PMR type symptoms first came on early 40s after an acrimonious divorce, which may or may not be connected, and I hobbled along for years undiagnosed and self medicating with OTC meds. Then something happened in 2019, I went from never having colds or flu to repeated respiratory infections that needed antibiotics for secondary infections 5 teams in a year. My immune system was shot. I had my first flu jab Nov 2019. Caught covid Jan 2020, from which I never fully recovered. It was around this time that the exhaustion and aches and pains ramped up a gear and I was having to take sneaky sleeps in the day to get through a workday and finally stopped work May 2021 as I was too ill to continue. I don't think I had had my first covid jab then, so I can't blame that. My thoughts are that the autoimmune thing was there low grade for a very long time and that the stress levels for the last 6 years of my working life and the viral infections are what finally pushed me over the edge. oh, and environmentally, the first 10 years of my life was lab research on parasitology compounds of unknown physiological effects. Like I said, probably a perfect storm going on there for me.
I am ex armed forces too recruited from the Isle of Man , jabbed to the nines in my late teens, Viking and Neanderthal blood ( not quite knuckle dragging !) attached to special forces so active, climbing mountains in my mid fifties pre covid, stressed to blazes by marriage breakup and Bingo ! Now 67 and really trying to get off steroids still feel somewhat robbed of energy but grateful not to be worse off !
I think you fit into my group, although sounds like you OD'd on stress. Good luck with getting off steroids. As other experts here have said some never get off steroids. As my GP said:' as long as you are below 5mg daily I am not worried'. I hate the thought of being on any medication and certainly steroids. But its quality of life at age 70 and if 2.5mg daily enables me to cycle, hike, climb and ski then that's a price I'm prepared to pay....for now!
Fun isn't it? I became a forensic genetic genealogist through this , a fascinating avocation. I can identify someone who died over 100 years ago by their degraded DNA, though it takes a team and countless man hours. Gotta keep the mind busy!
gosh ! I can’t even work out which parent to put where on my 23 and me chart - even though my mother did hers as well. I shall have to apply myself better !!
Not really in the mould here. Basically English, my lot can trace ourselves back to 1792, but a lot of Irish input. My father was an author and all I ever really wanted to do was write, so never followed a career path. Essentially laid back, hallo birds, hallo trees, long walks in green places, but got progressively ensnared by this life thing, increasing disability, full-time work, looking after my mother, financial woes, and single, no shared load. Culminated after her death in having to clear a two-storey house. Prelude to PMR acute financial stress as in can I pay the rent on top of being knackered. Ironically, PMR and all, my life is now, apart from the long walks pretty much how I want it to be.
Roughly 18 years ago my oldest sister developed PMR. She lived in a small village in SW Scotland, around the same time 3 or 4 people in the village were also diagnosed. A few years later her husband was also diagnosed. At the same time my sister-in-law's father had it but he lived in the south of England so unrelated. About 2 years ago I was diagnosed after my first COVID vaccination. I originate from SW Scotland and live there now though most of my life was spent in London. More recently my brother has developed Temporal Arteritis after his most recent COVID vaccination. In my family there are several autoimmune diseases. We also have Irish heritage which could point towards the Viking link. I think genetically my family have a predisposition to autoimmune diseases and something comes along (in my case COVID vaccine) which triggers it.
I believe it is a genetic component, my first cousin once removed, on my mom’s side, in Estonia has PMR also. We only share genes no common diet or environment.
Don’t blame wine either ; no alcohol in 36 years. But had a near fatal illness in 2012. Never felt well after that. In 2015 I received the pneumonia and flu jab at the same time. Shortly after that felt very unwell with PMR.
I an sorry I can't point you to any evidence but I think it must be partly down to stress.
I was a teacher and mother of four and always very busy. I think I also ate too much sugar because of feeing the need for energy, when busy. I see the folly of this now. Another person pointed out that anger may have a part to play. I guess being angry or feeling deeply about injustice might also produce stress. Perhaps certain personality types eg extroverts are more prone but as I say these are just my personal conclusions. I write now for a hobby and don't galivant about very much and I try to eat sensibly. I belong to a local PMRGCA group which meets once a month. Hope you are able to do the same.
I would certainly agree that being angry or feeling deeply about injustice is extremely stressful. A few of us could maybe "write the book" about injustice.
When I started with PMR symptoms, it was a friend who had it who advised me to get it checked. When confirmed, I found 3 others in our small Knit and natter group also had it. We're all female and over 70. None of us drank massively in our younger years and our diets were all reasonable so we're all a reasonable weight. I have other, possibly, auto immune conditions and have dry eyes that seem to be mentioned by others, but that might just be an age thing!!! Stress is also mentioned as being a trigger and I certainly think mine was set off by that, but who knows. It would be an interesting study.
Horrible doctor to say that. Those guys are like programmed robots. I got similar attitude from PCP even though I told him taking 20mg prednisone was shooting my glucose close to 400, and he said just take more insulin. My endo said that was unacceptable. PCP also refused to treat with any other drug. Finally got to 12.5 and saw a rheumatologist and I was dropping to 10, and he was willing to give Methotrexate but thought with my CRP becoming normal and me able to taper like I was doing to not stop the lowering doses of prednisone. If my CRP had still been elevated with me forced to take higher prednisone, he would have given methotrexate. MY PCP said Methotrexate is a dangerous drug, but IMO, prednisone is just as dangerous.
Most rheumatologists prefer MTX to pred in terms of safety - the PCP may well only have come across its use in oncology which is rather different with massively higher dosing and did leave my husband with PTSD about its effects.
he offered me a higher dose of prednisone to cover any flare that could happen!
If you can call it a flare. it was more complicated than that, never shall unravel it. Loads of symptoms after Moderna which might have been PMR, though they weren't my PMR symptoms which are distinct. I put the dose up anyway and it achieved nothing. Interestingly, at the end of the 6 m life of the jab I had a superb flare which was most definitely my very own personal PMR.
I was in the RAF. Always been fit and active until contracting PMR at 68 years old. Have been on Pred for 5.5 years. Currently 1mg. Thought to be an allergic reaction to a drug .
My stats: Scandinavian and Irish, red hair, green eyes and fair skin, raised in a cold climate. Female, over 70 years of age. Extrovert, overachiever, active, ate healthy, busy teacher. Then got COVID 2 years ago, which triggered GCA/PMR within 2 weeks. My neighbor, who also has PMR, diagnosed it months before my PCP did! Finally got on prednisone, and felt better within hours. I have tapered to 2 mg, but am currently back up to 4 mg. plus Sulfasalazine, and feel very good. I'm hoping to someday finally be off all meds and over this, but am being patient and taking one day at a time. This has been a very interesting thread.
interesting, one thought that some may or may not agree with is that I think people have had pmr in the past but it wasn’t diagnosed, it seems to have gained notice in the medical profession in recent years and certainly in Covid times, also the stress factor in it is so much more prevalent in modern times, I’m not saying people were not stressed years ago, but that we all seem to have to handle so much more , life is more complicated? I suspect your answer to this is not an easy one but you are so right to ask it.
hmm. Just found this which confounds your theory: Abstract. Only two years separate the initial descriptions of polymyalgia rheumatica (PMR) by Bruce in 1888 and giant cell arteritis (GCA) by Hutchinson in 1890. However, the existence of an association between these two conditions was definitely accepted only in 1964. In fact there is a series of articles concerning the history on US sites at: pubmed.ncbi.nlm.nih.gov/109....
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