Has anyone discovered what caused the inflammation and RA, what caused the gene to switch on. Diet can cause inflammation for example dairy, has anyone successfully switch that gene off.
RA consultants say they don’t know why RA starts, to me this is crazy, are they not expert or people who can diagnose based on diagnostics, and then prescribe medicine.
Terry’s
I am afraid as yet they don't know what causes RA to start. Heridity plays a part in some, but there is no one cause of RA.xxx
Simply put, our understanding of the human body is not advanced enough to say why many diseases get ‘switched on’ as yet. A good example would be cancer: we know genetics can be a factor, we know that lifestyle can be a factor, yet someone with a genetic predisposition that smokes might never get it, so there must be more to it. People that are vegan (so dairy free) still get inflammatory conditions: if it was as simple as diet, we’d all be laughing by now. Some people do seem to find benefit from dietary changes, but these people are in the minority. Our medical knowledge is actually still pretty rudimentary, it’s purely perception that we have half a clue. Any doctor with an ounce of humility would tell you that when asked.
All that said, if you enjoy reading, I would highly recommend a book by a Canadian medical doctor. It’s called ‘When the body says No’ by Gabor Maté, and subtitled ‘The Hidden Cost of Stress’. He’s a highly respected medic, and the book explains by way of case studies what we understand so far about the role of stress in triggering various types of disease in the body. It also explains the little known branch of science that’s been developed to study the role of stress and emotions on disease and physical well-being. I ‘question everything always’ and spend a lot of time reading medical papers: this book is referenced and stood up to my scrutiny. It also might go a long way to explain why life stress impacts on arthritis patients in the form of flares.
Great answer Charlie-G. I think suppressed stress has a part to play, certainly in my case. My RA started when I was 22, and i had jnursed my mother at home before she died from ovarian cancer which had spread throughout her body. Although she had been seeing a GP for six months there were no scans etc just xrays and radiotherapy back then for early diagnosis. I kept my stress held tightly down for those few months...mum needed me and came first, and so did my dad. Eight months later I was in a very bad place with RA. My dear Uncle's started six months after his son was killed in an accident. Again, he was too strong so that he was there supporting his wife and daughter, inspite of his own deep grief. I am sure that you are right, about flares etc...I have experienced bad flares over the last fifty odd years and can (almost) always look back and see what led to them, but more minor flares I have never find a connection. Is the book you are referring to an easy-ish read or is it rather technical?
These are exactly the kinds of things the book is talking about, Knip. I also see clear parallels in my own life with suppressing events and emotions, containing my own stress to deal with situations: I found the book via a medical friend when I told her I had started looking into the effects of stress on the body. I knew all the prolonged cortisol and stress hormones had to be having/have had some effect, and wanted to understand what that might be. End result being that I now believe more than ever that a number of my health issues are likely the direct result of either an inability to immediately deal with a situation emotionally at the time (usually needing to suppress to support others) or where I’ve demonstrated poor emotional coping skills and suppressed as a result of that.
It’s an easy read, for sure, and anything heading towards being technical is well explained. I would wholeheartedly recommend reading it, although I found it to be quite emotive as he talks to the patients about their lives and experiences. Each chapter is a standalone case study talking about the tale of one patient and their condition, so you can dip in and out when you have the time and inclination. I struggle to read at times because of neuro/eye issues I’ve currently got, so it was a great book for me in that regard.
It's my birthday at the end of the week, so, my husband will be quite relieved to know that he can purchase the book for me, rather than search for something else online! I'm looking foward already to reading it. Thanks for that. Kx
Happy Birthday for the end of the week x
Charlie the booknsounds good, going to look now for it, thank you
Thank you Marion, Kx❤️
Thanks for the link to that book Charlie_G. I had a look on it on Amazon and it looks very interesting so I’ve ordered it on kindle.
Hope you find it as useful as I did. As I explained in a reply to Knip just now, it is an emotive read due to the subject matter, but each chapter stands alone so you can dip in and out as time and mood dictate.
Clear answer Charlie_G. A herbalist surmised eventually that I had been run down for my RA to begin. Maybe that is a form of stress too. I'll take a look at the book you mention, thanks.
Hi I couldn't agree more ,I've always been a stress head which leads to bad tummy ,too much acid and as we know alot of our immune system starts with your gut. So put that together with stress and a massive traumatic event in my life and I ended up with ME ,the one they used to call yuppy flu ! . I remember the doctor saying your immune system is down and this will either last 6 weeks or alot n he meant s hell of a lot longer ,as it happens after 6 weeks my liver function and my bloods all came back and thats were the problem lay, it came back with a vengeance. Hence the over active immune system and RA.
My son and my daughter both are big worriers and both get a funny tummy.
As I've said to them keep the stress to a minimum, stress is an absolute killer for the body along with like you say other genetic factors, and those unfortunately are out of our control.
My Rheumatologist said to me he and his son were conducting research into the gut n immune problems. And that one day a definite link will be proven.
I await that news.
May be a long wait like 🤪.
So I do think diet if it means your gut is healthier can and should help. Well let's face it ,its not going to do any harm. If it means we all watch what we eat etc.
I've just come back from Turkey and my sons wedding, I ate all the wrong things, sugary stuff etc which in this country does cause a flair but over there nothing and thats because I was totally chilled and relaxed. So life style has so much to do with my RA.
So I'm trying to do more meditation and mindfulness to keep stress away.
And in turn less acid less of a flair up
Obviously along with my meds as like you said that alone will not cure RA but definitely helps manage it .
Xxxx
If only it were that simple. The scientists have been working on it but are not there yet. It seems there maybe genetic tendencies as it sometimes runs in families but that’s not always the case. It’s definitely not just one faulty gene and even if it were changing your diet would not switch off a faulty gene (that would require some very incredible genetic engineering, they’ve not even managed to do that for Breast cancer where there is one specific gene that makes it very much more likely). When RA starts something triggers the immune system (as it should do when we get an infection) but for some reason it doesn’t go back to normal. We don’t want to turn it off completely for obvious reasons (we’d very quickly die of an infection if we had no immune system) but the drugs used to treat RA should suppress the immune system back to normal levels.
However, I was speaking to my rheumatologist the other day and she said they are getting closer to a blood test which will identify which of the inflammation pathways are causing the inflammation in the joints and then they will be able to target the treatments better but we’re still several years off yet.
This page on the NRAS website may be of interest to you
Wish I knew how to turn it off!My RA began with an ingrown toenail! Keep well and safe 🏝
RA is an auto immune disease. I have two other immune disorders along with RA. It would be wonderful if scientists could find a way to switch RA off,,,
Same here - mine started a couple of years after I was treated for Graves’ disease which is an autoimmune overactive thyroid. That started after a very stressful period in my life. Someone mentioned about being ‘too strong’ and I’d say that’s been me all of my life.
Hopefully one day medical science may be able to answer your questions. Genetics and environmental factors both play a role.
With stress, or a bad fall, an infection or the likes being the environmental trigger which sets it all going.
People who have previously, or still do smoke are also more prone to develop RA than those who have never smoked.
But no one can say for sure what started their RA off
I’m pretty sure my daughter and my triggers were hormonal. She developed JIA at puberty and I was diagnosed a few months after giving birth, according to the rheumatologist who diagnosed me this is the most common trigger in young women. Menopause also seems to be trigger for many people.
Yes, there seems to be a link with female hormones too. But no one really knows or understands the mechanisms of what is involved.....one day hopefully.
And of course we may be speaking about different diseases ...sero negative, sero positive being one big distinction.
I agree re hormones. Although I struggled with severe back pain on and off for years, it wasn’t till I was 46 that I went into a permanent severe flare. I also had had the flu vaccine for the first time, and the pains started a few days later. The rheumatologist I seen then, did say rheumatology issues commonly worsened at menopause. I initially was treated as having polymyalgia, but had other symptoms she couldn’t explain. It was 4yr later I was diagnosed with ankylosing spondylitis, and told I’d had this for many many years as I had several areas fused. I remember being 29 and injured my back on duty, and was sent to A&E, where a registrar told me I had issues in my back that were going to cause problems in the future, I was so shocked I didn’t get to ask what he seen. My rheumatologist is convinced he already detected signs of fusion in my sacroiliac joints then. However in those days biologics weren’t an option, so I’m glad I didn’t find out then or I’d probably given up a career I loved. Re the flu vaccine, the rheumatologist did say it could also potentially be a trigger, not the flu component itself, but the adjuvants used, like aluminium. I still get my flu vaccine as I’m asthmatic, some people find that strange, but the horse has so ready bolted, so have nothing to lose. Sorry for rambling on 😂😂
Mine couldn't have been caused by stress, I was 6 years old. More likely genetic. Paternal and maternal cousins have children with RA.
Hi Terry, I was diagnosed with RA 11 years ago aged only 51 and it is hard. I was in shock to start as I am sure you are. I had a lot of stress and living somewhere very cold and damp for a while did not help! I went down the natural route... vitamins and turmeric, but sadly my pain was getting worse. I gave in and tried six drugs through my consultant starting with the basic Methotrexate which made me feel very sick. I am finally on a modern JAK inhibitor - Toficitinib and it has been a game-changer, I get the odd flare-up but I do most I want to now. I am sure you will find the best way forward. I was also told that wheat and my love of bread may not help. D (Sussex) 🙂
Medical diagnosis is the process of determining which disease or condition explains a person's symptoms and signs. It needs an expert to tell you which of these is responsible for your sore finger:
Adult Still's disease
Ankylosing spondylitis
Avascular necrosis (osteonecrosis) (death of bone tissue due to limited blood flow)
Bone cancer
Broken bone
Bursitis (joint inflammation)
Complex regional pain syndrome (chronic pain due to a dysfunctional nervous system)
Fibromyalgia
Gonococcal arthritis
Gout (arthritis related to excess uric acid)
Hypothyroidism (underactive thyroid)
Juvenile idiopathic arthritis (formerly known as juvenile rheumatoid arthritis)
Leukemia
Lupus
Lyme disease
Osteoarthritis (disease causing the breakdown of joints)
Osteomyelitis (a bone infection)
Paget's disease of bone
Polymyalgia rheumatica
Pseudogout
Psoriatic arthritis
Reactive arthritis
Rheumatic fever
Rheumatoid arthritis (inflammatory joint disease)
Rickets
Sarcoidosis (collections of inflammatory cells in the body)
Septic arthritis
Sprains
Tendinitis
They are experts but they are not God. Some things are impossible to find out. The important thing is that they can deal with our problems and make us more comfortable. I can offer my opinion and I would say that stress is an overwhelming factor in my RA flares.
No, they are not gods but I can understand why the original poster wonders why the ‘experts’ don’t seem to at least have some idea of what can trigger RD.I’ve just come to the conclusion that in my case it’s just another autoimmune condition come to join the party and once you have one autoimmune condition you are likely to get others. Is it in the genes? Diet? Stress? A left over from a virus? Who knows but it’s a pain in the proverbial.
It absolutely is and you are likely to get others if you have one. I have another one that I had years before RA and a possible third yet undiagnosed.
I just go with the flow ….like everything in life …if there’s nothing you can do about it - why stress yourself worrying about it? Especially if stress causes you more pain?I am grateful for all the medical help I have received since I was diagnosed with RA. I’ve had ups and downs with medications…. the one I’m on now seems to have stopped working …..but onwards and upwards….it’s the only way to go….wallowing in “what if” is counter productive for me.
If all the highly qualified scientists & doctors haven’t worked out the answer yet…….I’m certainly not about to stress second guessing them.
I just take the meds & hope they work….there are a lot of ailments worse than RA.
I have exactly the same attitude, I see no point in seeking out why me. It’s happened and you have to deal with it. My mum who is 80 and always been fit, was diagnosed recently with pulmonary hypertension, and is insisting on every test under the sun to work out why she got it. We constantly disagree over it, if a test isn’t going to alter my treatment, I see no point wasting nhs resources having them done. She had a sleep study done recently and was annoyed it showed no issues, because she has a friend who shared a room with her and told her she has sleep apnea because she snores. Sp she wants a cpap machine, and be able to tell her friends she has sleep apnea. I struggle to understand why someone would want to have sleep apnea. She’s even more annoyed because I also had a sleep study which raised a few issues, one being mild sleep apnea, but thankfully doesn’t need treatment. I’d happily swap places with her 😂. As you say onwards and upwards, it’s counterproductive to worry about why you get a particular illness. 🤗
I have a friend in the US who is just like your mother…he is a very healthy 80+…..I have known him since we were very young & he has always been the same …the epitome of “I hear about it I’ve got it”!He even asked to see MY blood test results in case he might have missed something …so I added the odd hieroglyphic & a few zeros…& emailed them off …..that kept him busy for weeks!
I’m going to join in now,,,,I am wondering why in this very hot weather I feel so cold I shiver. ..I went out last week, before the heatwave..& I had to come home because I was so cold…felt OK but frozen ..my temp was only 33°.
I know thyroid can affect temperature….but for me that’s one organ that hasn’t joined in ….yet?
More blood tests I guess if I don’t warm up soon…but in fact this morning it is quite cool….already got my cardi on…& another one in the car.
How bizarre, although I’ve scared a few health professionals during the pandemic, where they checked your temperature before entry. If I’m doing exercise or even just out walking, my temperature drops to 32-33 degrees. I’m assuming it’s because I’m unfit and find the task challenging that all my blood has gone to my vital organs resulting in cool extremities. Happens at home, if I check after exercise, but I don’t feel cold. Might need gp to run a few tests 🤗
Last time this GP tried to diagnose something she ordered 18blood tests..,,my rheumy asked whatever my symptoms were to merit such a lot…..in fact I didn’t complain of anything …she just decided on that lot all on her own.My temp is up to 34 now…..I have BPV….I’m wondering if it was because I was lying down…..can’t think of anything else…but I’m still cold! If I don’t warm up…I’ll give the rheumy nurses a call….they oniy call back on Fridays..so plenty of time
I echo what Charlie G says and highly recommend the books suggested!
In my case, I was predisposed to the disease since my late mum had had RA before she passed away with Multiple Myeloma. Stress (repressed stress) over tens of years was the final straw that triggered my RD. I do believe diet plays a large part too, I've been a vegetarian all my life and truly believe that helped to keep my RD at bay for so many years (I'd had a stressful life being there for a everyone else but me for c. 45 years before RD reared it's ugly head). I had been pretty healthy until that time.
As for a specific diet, I believe we all respond differently as we do to the meds though I do believe dairy milk and deep fried foods can be inflammatory. Whether gluten plays a part, again I don't think anyone knows for certain. I have read RD can be caused by a 'leaky gut' syndrome whereby our gut lining develops minute holes allowing the gut bacteria to pass into the blood stream which then attack the joints. It is thought that gluten plays a role in causing the leaky gut. Prolonged and repressed stress, I truly believe is the biggest culprit.
For me it is stress, it came on badly when my mum died, and stress causes my muscles to seize up and the pain is unbearable.
Interesting you should mention diet. Out of sheer desperation I've stuck myself on an elimination ketogenic diet. For the time being at least I'm on extremely low carbs just to see if I feel better. I'm two weeks in, and I feel significantly better. I'm wondering if grains have been an issue in my case. Also lost quite a bit of weight, which is good because I'm carrying round more than is sensible. Pain hasn't gone completely, but I no longer have that bone crushing someone smashed my back and knees with a hammer feeling. I guess I'll see. It's not the worst diet in the world (unless you're vegan!).
I have a feeling that sometimes clinicians find it easier to just say 'we don't know' than to go into the details of what we do know.
Do you use Google Scholar? There is a lot of research out there to read.
I wish they did know, then maybe they could stop it happening to begin with. No one in my family has/had RA and I was not stressed or had any trauma when I got it but I had been back wards and forwards to hospital/GP with joint problems and inflammation from an early age after having septic arthritis aged 7. I wish I knew as I’m sure it’d be helpful to treat if we knew why it appeared.
To follow on from the above book recommendation; “The Body Keeps The Score” by Bessel van der Kolk is another good one (for any trauma Survivors).
Heredity can predispose you to develop a number of autoimmune diseases but it usually takes other factors eg environment, stress etc to trigger a disease. Habits like smoking, fizzy drinks, diet : red meats, processed foods, alcohol wheat, dairy can also increase the likelihood of A-I diseases developing. As for diet, some foods do reduce inflammation, eg raspberries, apricots ; there's much info in the medical / academic literature. RA/RD appeared in my 70s, after PMR in my 60s both stress related. A post grad short course gave me so much info and helped me identify stressors and different ways of coping. This has been a great help. Hope this helps
Hi Terry
Medicine has got a long way to go.... In a hundred years time they will look back at our treatment and be as horrified at the side effects of methotrexate as we are at the surgical instruments used in Victorian times.
We have decoded the DNA for humans in the technical sense of knowing the order of the genes, but that's not the same as knowing which genes code for what. There was a huge breakthrough recently when they discovered a gene that causes lupus - but it's not the cause for everyone and that doesn't tell them how to fix it, just where to start.
Causes of RA - often stress or a severe illness triggers it. Your immune system reacts to illness but also to stress. In autoimmune conditions it ends up permanently switched on. However the pathways for the immune system are varied. Sometimes a particular food causes it, such as gluten for coeliacs, sometimes a virus- e.g. type 1 diabetes.
Currently the rheumatologists are walking around in a mist which is very slowly clearing and as we don't yet know what triggers each illness, either in terms of genetics or environmental triggers and it varies for everyone, it's a case of trying different treatments until something works. Add in different side effects for different people and you can see they have a very difficult job.
Jennifer
Thank you Jennifer. I have stopped MTX as the side effects are awful. I am trying anti-inflammatory supplements and avoidance of inflammatory foods. Switching off the condition is the holy grail and I struggle to believe that no scientist as yet as found that key. I hope the biocompanies don’t have a vested interest in not researching this, a bit like smokers and tobacco companies.
Simply dosing up on meds that destroy you in many ways is only treating the symptoms, so myopic.
Fresh blended veg, Flax, 0m3, turmeric, diary avoidance. So far so good. I only have one inflamed MTP joint. Negative RF but CCP of 200.
Terry
There's plenty of research going on for cures. Also there's a lot of research going on into genetics which is funded at the university/ research institute level so there isn't any disincentive for them to do research. Then when they find out what a gene does that information is made available, there's been a world wide agreement for a while now that you must make knowledge of what genes do publicly available, no keeping it to yourself.
The people who are likely to come up with a genetic cure are often different organisations to the ones producing the pills, so that should ensure progress is made.
Diet and RA
Diet and RA
Diet and RA
Change of diet to help inflammation 
