theguardian.com/science/202...
One of the things I try to convey is the wide range of potential triggers of PMR. There are many things that upset the immune system but then there is the question of why one person develops an a/i disorder but someone else with a very similar background doesn't. And then it probably comes down to the genes. This is a good article relating to that
Interesting- thanks.
This is an interesting article, thank you for posting it
My diagnosis of Stills Disease (JRA) was in 1979 when I was 17. On the subject of diet a possible influence on AI diseases - from age 8-16 I was at a boarding school where the diet was atrocious, nothing fresh, bread, stodge and soya although I’ve never eaten meat or meat substitutes. My daughter-in-law (34) eats very badly indeed and has just been diagnosed with MS.
Thanks for the post.
Interesting, both my sister's have AI diseases...we have said all along genetic, and possibly diet when young.......
Thanks for posting this article. I have had RA since my late 30s (other autoimmune diseases have developed over the years). I did mention to my then consultant and the one after him the possibility of diet and certain food types that could possibly be causing changes in the body giving rise to such diseases. They firmly denied this possibility! Not great to see such narrow mindedness in the medical profession…. but it still exists unfortunately. So it’s a relief to know that some researchers have finally clicked and are doing research at last. I only wish this could have started much earlier. My instincts always told me it could be genetic and that by avoiding certain foods and lifestyle one could reduce (or perhaps avoid developing) the drastic and life changing diseases. Too late for me but relieved it could help younger generations.
The role of diet is too readily dismissed in the English-speaking world I feel - because there seems more concern here and generally in the German-speaking regions of Europe. That said, I gather PMR patients in France are also given dietary advice - they appear not to like it 
I think Brits tend to view it as being alterative and woo. But there is increasing evidence that the gut biome and the immune system are closely related - and your diet has a major effect on the gut biome. I'd like to think my diet is pretty decent - and that it has something to do with the fact I seem to have fewer of certain types of common PMR complaints. It doesn't appear to have gone away though! And my current diet does need a bit of cleaning up - been rather lax the last few months.
I really can't put PMR to lifestyle or food. Even just after the war our family never knew hunger. I know some things were difficult to get but fresh veg were always available.
Stress - at least as an adult - didn't come into it either. Of course there were ups and downs but stress?!?
I am sure my mother had it. I now remember her aches and pains and they were very similar to PMR.
Thanks, yes, interesting article. More than interesting, educational. Here in France the hospital gave me the diet sheet after diagnosis (low salt, no sugar basically). Very unFrench indeed but anyway I complied and stuck to it. Now feeling the great benefits of real food, home cooking. No longer going to let the big food manufacturers put my health at risk... (read what's in those packets before you buy!)
Indeed there is dismissal of the importance of diet in the UK. Hopefully there will be a change in thoughts and attitude. Can imagine most French people will object to not eating white (delicious crusty) baguettes and more. However one has to take some responsibility for one’s diet. I have a pretty good diet but disease is so entrenched now and at times I feel low and eat naughty sweet foodstuffs. However, I do try to keep to a healthy diet.
My usually reasonable diet has slipped recently, and I do feel the difference. Despite being down to 5mg with attempts at 4 1/2 pred, I keep getting really hungry, which I guess is a result of the wrong stuff! On the whole we Brits need to improve our knowledge about the impact of our diet on our general health, but I guess most on this forum are the better educated.
I’m a massive believer in the benefits of good dietary choices. As well as my PMR I have primary progressive MS diagnosed in 2013 but I believe it might have been lurking in the background from around 2000? Once i was diagnosed with a fairly gloomy prognosis - inexorable deterioration and the spectre of the wheelchair within 5- 8 or MAYBE 10 years if I was ‘lucky’!?! - I did mountains of research and found first Of all Dr Swanks research from the 40s and 50’s thru the 90’s which was very compelling. I started on his diet immediately and kept reading. Then shortly after that in early 2014 I discovered the OVERCOMING MS charity with it’s enormous website - all free - with dietary & lifestyle recommendations which I’ve adhered to ever since. It’s stood me in good stead. I’ve had no progression of symptoms since then. My neurologist admits to being surprised and just says keep doing what I’m doing, but won’t commit to saying it’s OMS that’s doing it. He still says it’s unexpected and unexplained 🤷♀️🤦♀️ I was VERY conflicted when I developed PMR as the two ‘recommended’ diets are very different but after much gnashing of teeth I decided to stick with the OMS diet which is very low saturated fat, no processed oils apart from extra virgin olive oil, and importantly, fresh Flax Oil, whole food plant based (almost vegan) but with egg whites and fish/seafood allowed. It is higher carb than the accepted wisdom for people taking Pred, because there’s a large amount of fruit and veg and everything plant (except coconut!) but I’ve stuck with it through my PMR journey. I’m now on around 1.25 mg pred after just 2 years - I’m fluctuating slightly on a DSNS very slow reduction that I tweak very gently as my symptoms require and that is suiting me. I’m very aware I could flare at any point which may or may not have an effect on the MS so I’m really cautiously and slowly reducing by assiduously cutting tablets as well to keep the ‘reduction steps’ very small now. Sorry this has turned into a novel 🤦♀️
This group has been absolutely fantastic all the way through this journey and I’ve no idea where any of us would be without the generous gifting of their time, support & information from the amazing people who are the backbone of this site and all the members who so willing share their experiences … You all know who you are 😀. Thank you!
Paragraph on particular versions of diseases is particularly interesting.
I thought so too.
'We have to learn how to group and stratify patients so we can give them the right therapy' I hope that will (eventually) be the case with PMR, different 'types' of PMR being treated in different ways
Thanks for the link, that was very interesting. This is the second autoimmune disease for me after having to take steroids and immunosuppressants about 20 years ago for pemphigus which after 3 years went into remission. I have always wondered about the cause, I have no relatives that I know of that have suffered with autoimmune disease. I have only recently taken care with my diet, although lapsed badly at Xmas and new year and really felt the consequences.
It was nice to read some researchers finally admitting to the fact that they , and other specialists , are often lost on how to treat a patient even with more therapies being available because they aren't sure exactly what combination of illnesses a patient has , so they struggle to know how best to treat it.I just wish more local doctors and specialists would admit the same and be willing to do more tests outside the usual gamet or ask colleagues for help. It is the fourth rule of the Hippocratic Oath after all.
I'm glad I got past the first few paragraphs of comments which did begin to raise my alarms bells at first when they began talking about the genetics not changing over 40 years so why could the numbers be increasing.
Yes , we are all dealing with what we have inherited , and it appeared that there was less autoimmune related disease before related to genetics , but that does have more to do with the fact that genetics tests and autoimmune testing was not done so often as mist doctors overlooked or didn't notice what was happening. Many of our parents and grandparents struggled with similar symptoms to people in our generation but didn't get diagnosed for them and often ended up with a shorter life span because of it.
I did also appreciate the comment that eating a ton of Big Macs isn't going to cause you to have an autoimmune disease stemming from genetics , its eating a poor diet , or having a sedentary lifestyle that can contribute to a person whom already has a genetic propensity to develop symptoms because of their inherited autoimmune or antiinflammatory conditions whom are more likely to be affected by diet and lifestyle choices.
This is where diet can be playing a part in the increase of people developing chronic health conditions , especially at younger ages than before. And it could be the reason that more people in Developing and Middle Eastern countries have begun to show a rapid increase in these conditions in the last fifteen years , as the fast food industry and fast foods have become rapidly more popular since then, and have begun to encroach on the usual diet in those countries .
Thanks for that Pro , those articles have given me something to do while the OH is snoring in the corner !
Yes - the idea that the GENETICS hasn't changed is only a red herring. It is the effect of a changing environment that relates to the genetics that has changed (does that make sense?).
Worries me a bit about the level of curiousity in students who get straight As - maybe the ones who have to work a bit harder also look a bit harder at the more human side ...
That is exactly how I see it , change in environmental and lifestyle , but also the fact that there is more acknowledgement in medicine if the possibility of an autoimmune condition . People in general are more proactive and informed than they used to be so more likely to go to a doctor and question what is going on much sooner than before.Thank goodness we have got past the age of , ' put a bit if ointment on it and brush it off '.
"Thank goodness we have got past the age of , ' put a bit if ointment on it and brush it off '."You think??????
OK , well many of the patients have , I have experienced the treatment from a number of doctors out there that still follow the same old philosophy ...unfortunately!
I happen to have an excellent GP but I think there is a transition between the patriarchal old ways and the shiny new ways. The one can be overbearing the other formulaic, with us patients falling in the gap.
Us ending up in the ditch is probably just due to lack of experience in GP world - whereas young rheumies seem to be rather more broadminded. Mind you - the GP problem now is compounded by the inability to see one f2f. While the idea of using nurses and paramedics in GP practice is very useful, they lack expertise in certain areas. If I have an injury, the paramedic is probably preferable and there are other areas where they can triage brilliantly - but there are things they haven't had enough experience with.
The real underlying factor is Stress , of course. People often confuse Stress with Anxiety and forget that Stress isn't just a bad thing but any extra activity , either positive and negative , that forces the body and brain to deal with more than it can cope with. The modern way is to try and have it all and we are often all living lifestyles that are far more hectic and unbalanced than the generations before us.
" Don't burn the candle at both ends." was a very common saying that I used to hear adults use all the time when I was young.
Now people seem to encourage each other to push the limits on every part of everyday life and make people feel guilty or pressured if they aren't following the same high impact lifestyles as their friends.
I sometimes wonder whether people are often pushing people to follow their ways so that all of their friends feel as frazzled as they do.
What people also don't recognise is that Food , or should I say Digestion, is a form of Stress too.
It may be lovely going in but if we systematically eat more luxurious foods we put a huge amount of Stress on our bodies while we try to process it. Food is as likely to cause the development , or flare up , of a chronic condition over time as any other Stressor like overwork , alcohol , smoking or over enthusiastic candle burning if food consumption is not well balanced ( I said well balanced rather than excessive because there are a number if studies that show that anorexia and dieting can trigger the development if chronic health disorders too) .
I agree 100%. Well said … I was that ‘candle burner’ for many many years for sure, and I thought I’d mended my ways when I went on the OMS lifestyle with stress reduction measures built in, but actually, looking back to pre PMR I had very much reverted to rushing around like a headless chicken … lots of it travelling and having fun, but also several very stressful business events. I was nowhere near having enough sleep or true relaxation… so PMR possibly self inflicted in that respect- hey, ho, we live and learn right? Ha, maybe I will learn this time??
Not so much self inflicted, more that you have learnt to pinpoint the contributing factors that added up to the PMRs arrival or to a flare up. I wrote a post sometime back on Stress and pointed out that many of us can end up with these conditions and may not be able to see any causes in lifestyle that brought them on .
Sometimes a Life lived quietly can still be blighted at some point from a chronic health condition.
Fate and Genetics !
At least you know what things you need to scale back on now and can judge that a flare might be on the way if you don't slow down . You are going to be able to manage your PMR much better because you have learnt from the lessons so far.
Hello! I amInterested in the name you have chosen!!! I’ve been bleary eyed since pmr and predisolone .. and people say what do you mean exactly??? Difficult to explain! I had permanent lenses put in about 5 years ago and questioned if I should reverse that.. apparently not advisable.. and an unlikely cause of blearyeyes!
It does seem
Better if I put on my longsight glasses..
There are some very interesting points raised here.
Stress, yes, but I also believe genes play a large, deciding role. My first cousins and I grew up in different countries, sharing environment only for a few years in early childhood. All of us have some sort of autoimmune condition. With the single exception of the adopted son who, if anything, has had the most stressful adulthood of the lot of us.
Well yes , I'd already mentioned genetics as the root in my initial reply then we began discussing Stress , of all types , as the key trigger to the activation of the illnesses in our genetic profile that we had begun to discuss. It has been a very engaging topic and interesting chat this afternoon. Take care , Bee x
In my view, you are spot-on Blearyeyed. Thank you.
Thank you , I just wish it hadn't taken fifteen years of stumbling in the dark to get there! Hugs , Bee x
Very interesting, thank you.
Most interesting discussion. Thank you.
I have eaten an extraordinarily healthy diet most of my life. I treat food as nutrition and that's it. And here I am. But I did have mononucleosis as a teenager and a "post-viral syndrome" for two years about 20 years ago. I suspect that the causes of autoimmune diseases are complex and the cause of the tipping point probably unidentifiable. Diet will be part of that equation but it won't be a quick fix.
One reason for the increase in autoimmune diseases is the willingness to give them their correct label (and sadly that doesn't always happen fast enough).
Thanks for this
Very interesting indeed. I’m just embarking on a pre diabetes diet and quite looking forward to it. I’ll tell you if it works!
MrsNails did very well
Have tried going on to the Diabetes UK website and looking through their varied food plans and recipes. There are some nice meal ideas and even desserts on there that surprise many people whom assume a diabetic diet is always low carb or no foods that contain sugar.The truth is to lose weight or reduce insulin resistance safely diabetes sufferers still need a larger amount of carbohydrate than people think , especially in the long term to reduce the risk of hypos or dizziness occurring in daily activity.
I’m a bit nervous about the two months 800 calories diet and think it better perhaps to do the two days at 800 and concentrate on careful eating the rest of the week. I’ll see. I’m busy buying chia seeds and pecans at the moment..😀
It sounds like a healthier option .An 800 calorie diet is very extreme any way and I'm surprised it is being recommended for two months !Where did you get the advice to do that?
An 800 calorie option isn't usually advised and if used usually only lasts for a couple of weeks in times when you want a quick fix.
If you are going to go on a diet generally speaking 1200-1500 calories is considered to be a more healthy and sustainable calorie intake depending on your BMI and health needs before you start ( you can see options for that on the diabetes website).
A 1200/1500 diet can be used for longer and give you an achievable 2-3 lbs loss per week whilst also helping you to improve your diabetes status.
Just like when you taper off a medication its better to take it slowly and avoid side effects or Yoyoing while changing a diet.
Your idea about having the odd 800 calorie day whilst on a more sustainable eating plan certainly sounds more sensible and likely to produce longer lasting results.
Its always a good plan to start eating healthier options and reducing your calorie count to the number on your diet plan in the week before a diet to prevent any of the dieting side effects.
If you aren't taking one already , a multi vitamin and mineral supplement taken with a meal , which is suitable to the drugs you take , is good to start and continue from the week before too , as is building up your fluid intake.
People forget how much of their fluid comes from their food and can get dehydrated while dieting because of it.
Often hunger is a confused sign from your body because it wants fluids which us why drinking a cool water or cup of tea can commonly stave off your hunger pangs.
Good luck with what you choose to do. Hugs , Bee x
The 2 months of an 800 calorie diet is the framework for a proven approach to reversing Type 2 diabetes - it was developed by a group in Newcastle and a large study done in Newcastle and Glasgow confirmed its benefits. It is possible to have it prescribed by your GP - since it uses nutrition shakes to make it simpler and they don't come cheap. Like any diet, it should be discussed with your doctor before you embark on it and they do say that in all the books. But the previous received wisdom that 1000 calorie diets are extreme has been revised and a calorie deficit of IRO 500 is a basic approach to diets now.
You are lovely! Thanks for the support. What you say makes sense and just starting with no more mince pies, Christmas cake and chocolates will help! It’s Dr Moseley’s diet but a bit fierce for a pre diabetic on steroids! ❤️
That's what I'm hoping - my diet in the last 4 months has been far from my normal very restrained one and I have put on some weight. It is actually quite amazing what you can have on your plate for 800 calories - no need to go hungry!!!!
Does that mean you are back on the cheese and the ice cream? 😊
I assume that they take having other chronic health issues or taking steroids into account before you are put on to it . The OH is Type 1 so the approach we use for him has to be quite different but I know from my own experience that cutting calories too deeply , no matter how well balanced I keep the nutrition , it does increase my fatigue.
Calories aren't the entire story though!Haven't quite finished the icecream - won't buy any more. The fridge seems to have quite a cheese shop in it ...
You must get some nice varieties we have never heard of living in the Italian Mountains . What's your favourite , a new found Italian or a good old British favourite?
It is actually pretty difficult to find English cheese - used to get cheddar, Red Leicester and occasionally Double Gloucester in a small supermarket chain up the road in Austria but the choice reduced because of the B-word and access because of the Big C word! Big Spar here does Stilton (at a price) and has just started having cheddar. There are 2 local alm cheeses that are quite similar to the English cheese flavour and consistency - many have a very different sort of flavour which is an acquired taste. Love Parmesan of course - proper aged stuff! Very partial to the gorgonzola and mascarpone layered cheese
valsana.it/en/gorgonzola-ma...
and a good dollop of that in broccoli soup is just amazing!
Looks good!
Pretty much an instant low carb cheese sauce ...
I know what we are having for dinner , I've got some leftover broccoli and cauliflower in the fridge . Its broccoli and cauliflower cheese for dinner. Yum!
Yum indeed!!! I make it with an egg beaten into Greek yog for the "sauce" - more like a quiche texture though
I thought that autoimmune conditions had a genetic component. Many are prevalent in my family...hypothyroidism, vitiligo, psoriasis, alopecia, and me with PMR.
On top of our genes is something called an epi-gene. An epi-gene can be turned off or on. Studies were done over many years of genetically identical twins, where one twin would get a cancer of some form and the other twin would not. Many factors were studied and the conclusion science came to is that some stressor in the life of the affected twin had an epi-gene that was turned on. The other twin did not. I know that emotional stress and trauma played a huge role in my illness. A stressor can be many things, a family trauma, a life trauma, exposure to an unknown toxic agent, or a chronic nutrient deficiency.
I have a life time of family trauma, whackadoodle family, etc. I grew up in a toxic neighborhood in St. Louis, a mile from Monsanto, Purex, and a ton of other factories close to my house. After my divorce from a paranoid alcoholic I started dieting, (1200 calories a day) and worked full time while going to college four nights a week, with a one hour commute each way, every day. During this time my only child, a college age daughter, hated me with a passion for divorcing her father. Oh, and somehow I found time to power walk 4 miles a day. Typical 1990s superwoman.
I became ill. Go figure! That, along with a tick bite on my head started the downward spiral I have experienced since 1994. I am PMR 20 plus years, GCA 10 plus. Prior to that I was always a hard worker. But, I always seemed to struggle to have to do what others did with ease. I also have MGUS, and Hughes Syndrome.
Oh, and my mother was a staunch size 8 all of her life. Very important to her. She gained no weight during pregnancy!, and I was born one month premature. Of course, it did not help that she was married to an alcoholic schizophrenic. I can not help but wonder how much of my Mother's trauma was passed down to me.
I think it is invalidating science to pin a cause down to one thing. We are a product of a life time of input, with a genetic base that can be turned off or on, depending on that input.
With all of the trauma I have endured, both physically and mentally, I don't think I stood a chance. I am also a cancer survivor. As they say, strong women are not born; they are made from the storms they walk through.
Treatment of PMR - an interesting article
Interesting article about evolution of humans and autoimmune diseases
