Rheumatoid arthritis- diet : Hello, I've just joined... - NRAS

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Rheumatoid arthritis- diet

Mermaid11
Mermaid11

Hello, I've just joined today 🙂

I wanted to ask if anyone has has a positive impact by changing diet or cutting out food groups that has made a difference to the disease?

I was diagnosed in summer 2019, have been on benepali for 10 months, caught an infection last month & its sent me into a flare up, now only on steroids until I am allowed back on benepali.

117 Replies

Hello and welcome to the group Mermaid, I hope you find it useful and supportive.

There have been posts regularly about diet and RA, if you use the search box and filter for NRAS they should come up. I personally have never found what I eat has any impact on my RA.

If you haven’t already found it the NRAS website has lots of useful info. Here is a link to the part about diet but there are others covering various aspects of life with RA.

nras.org.uk/information-sup...

Feel free to join in, ask questions etc as there is a wealth of knowledge here from newly diagnosed to people who have lived with RA for many years 😊

Mermaid11
Mermaid11 in reply to KittyJ

Thank you for your reply. I find it odd that if diet does claim to make a difference, why its not mentioned in treatment plans. Ive googled so much and its all conflicting information, but I know everyone's journey is different. Its just so nice to be able to ask questions to people who understand what we are going through x

AgedCrone
AgedCrone in reply to Mermaid11

Diet isn’t mentioned in treatment plans because there is no clinical evidence anywhere in the world that has proved any collection of food will significantly help,RA.Of course some people do say if they do/don’t eat certain foods they feel better.....so the way I see it...is eat sensibly whatever healthy food you enjoy,& listen to your rheumatologist re your medication,

Mermaid11
Mermaid11 in reply to AgedCrone

Thank you! I'm sick of people asking me if I can help the condition by eating anti inflammatory foods ect. I feel like they are googling information on my behalf. I keep replying with, im on a treatment plan under rheumatology so im taking that advice. Im am trying to eat better, as the steroids are making me feel hungry all the time and I've already put on so much weight in the last year.

AgedCrone
AgedCrone in reply to Mermaid11

I used to make up really horrid frog & pond water diets...& tell people they should try it because it “might help your skin”...... when there was nothing wrong with their skin! That used to shut them up beautifully ....I sometimes think some people think RA is associated with loss of common sense the really patronising suggestions they come out with.

But I think little bit of what you fancy does you good ...within reason of course!😅

Oshgosh
Oshgosh in reply to AgedCrone

I love the idea of the frog and pond water advice to people who know everything!My problem is my friend who keeps saying she doesn’t like taking tablets.

I don’t either* I have to take approximately 20 plus tablets daily.”

I’m not seeing anyoneatthe moment cosof pandemic.

I’ve decided that next time she mentions it,I’m goi got say that the tablets are keeping me alive.

Tak care

AgedCrone
AgedCrone in reply to Oshgosh

Well I’ve been “taking the tablets” for over 20 years for RA... and once you get the right combination you can lead a really nice life.....tell her that......

What a lovely positive reply. Thank you

It’s all in the head Flipper....accept it’s going to be a long haul,& just get on with it was/is my attitude.There are ups & downs....so make the best of the ups & spoil yourself on the downs.

Despite losing my job due to this I'm learning to go with the flow and not stress whilst desperately applying for jobs.

Oh my, im so sorry to hear that. Do you mind me asking... was it due to the current climate with covid? I'm currently at loggerheads with my employer as they seem to think I'm not as ill as I think I am 😳 I've been off sick for months & when I'm due to return im being taken to disciplinary. Id be interested to hear if anyone has been in a similar situation. I think the stress is making me feel even worse whilst being stuck in x

I became ill overnight last Feb.Went sick, got diagnosis April ra.

Put on lots of meds so put on shielding.

Rheumatologist treatment was delayed due to covid. Finally got biosimilar which shows signs of improvement but they said can't do my job nor can I have part time when we'll enough.

Told to take all annual leave until 3rd meeting when I will no longer be emoyed by NHS.

Could fight it with union but don't have the energy, I'm trying to get this Flare gone.

We can fo without this worry whilst ill.

Similar to me no conversation about anything else I could have done for example office only or maybe reduced hours xx hope you’re sorted now x

We're you well enough to get another job 👍

Hey wasn’t very well at the time at all had only just got off crutches but was lucky enough to gain my new job where I had temped previously and thankfully can work from home x I don’t know how well I’ll

Get on if they go back to the office tho x I have to have a nap at lunch currently 😂😂

I know, the fatigues worse than pain once you're mobile again.Thankfully I started biologics, I'm on 4th jab and I can actually stay awake all day now, even if some days I don't actually do much. So glad you got new job. You sound like a fighter so I'm sure you'll always find work from home if needs be.

Think your spot on with the fatigue 💤 glad to hear your on the mend x I’m sure you will find a job soon x sending lots of luck your way x hope it all turns out for the best for you 😀

Thank you that's really kind.I hope that you find some comfort too

🤗

Keep me posted how you get on

Ladybird25
Ladybird25 in reply to Mermaid11

Hi, I've just seen this post. I was off sick from my full-time busy job in the NHS. I suddenly developed symptoms one afternoon and struggled on as I got gradually more symptomatic with no one knowing what was wrong with me. I was repeatedly sent to A&E by my GP and had various investigations and was misdiagnosed with PMR (polymyalgia rheumatica). I was given high dose steroids, which didn't really address my immobility and other symptoms. I was off sick for 10 months when I was eventually given DMARDs, which enabled me to return to work part-time. During my period of sickness, I was repeatedly called in for sickness reviews, which were always highly stressful and upsetting. I kept being told that I needed to get better and get back to work! I could hardly manage moving around the house, let alone get back to work. Two years after first developing symptoms, I was eventually diagnosed with RA. I have long-term damage to my joints due to several years of chronic inflammation, and I also have irreversible side effects of the long-term steroid treatment. I am now working full-time again, but I still have periods of difficulty and flares, but I appreciate I'm lucky to have a job. Stay strong, and hopefully things will work out for you. xx

That is a really big down flipper. But maybe it was meant to be & whilst we are all at home at a loose end...some other employment may pop up for when you can work again.....or the same type of job but better!I had to give up my first choice of employment due to illness (not RA,)

And after a year out doing a job I quite enjoyed, but didn’t want to spend forever doing ....I found a job I stayed in for 20+ years...so soldier on...don’t over think everything ....A lot of people are going to be jobhunting and a lot of entrepreneurs will need to employ people.....or you could be that entrepreneur & start your own business..... so be optimistic !🌸

I know, I've been racking my brains as to what my skills are..Only worry is that my records will say dismissed due to ill health... Not employee of the year material

😆 Never mind, I'll cross that bridge when I get there. Thanks for reply, don't worry be happy...

If I were you I would get an appointment at the CAB ....they have solicitors who specialise in employment law and there may be a way to have that removed from your record.Presumably you weren’t consulted as to what was written on your leaving details and there may be a way to have it rephrased.

A well worded, considered letter from a solicitor often wakes up employers and it’s always worth a try.

After all you have now been diagnosed and once you are settled on your RA meds things should look up.

You probably won’t be considered as a long jump gold medal entrant.... but there will be something that you can do better than somebody else so you will get the job!

Go for it...but get those meds working first.

Thanks, I did mention my concern re wording of reason for leaving and they said an employer would still want me.. Just fobbed off by HR. You're right though, I'll get this Flare down, get meds that work and use my brains as to how to get work.Thank you

Have you thought about self employment? Or working from home? All my team are remote and home-based. I even have people in Mallorca and Bulgaria. There are so many opportunities out there and as AC said, you have the opportunity of time right now to have a look around.

I understand it's hard for you, but from a business owners perspective, there is no way that I could carry the wage for someone for months on end as it would impact on everything else, including the price our clients pay. Sometimes, we just need to be philosophical.

Have a look around on places like LinkedIn etc...and start putting out some feelers. You never know, this may be the best thing that could have happened :)

Yes, you're right.Thank you so much for your help.

KittyJ
KittyJ in reply to HappykindaGal

Hmm Happykindagal maybe there’s lots of opportunities where you are but here there are very few for someone with a disability and physical limitations, however much they want to work. Finding something that you can physically do for any length of time is frustrating and depressing. Apologies for bringing my misery to the post 😞

HappykindaGal
HappykindaGal in reply to KittyJ

Okay. I run a business with severe RA. All my team work remotely. Two have crohns, one MS and it works for them. There are many remote working opportunities out there right now with companies like Sensee, Arise, Giffgaff, and many tech opportunities too. Just need to look around and see what there is. They're there for the taking 🤷‍♀️

KittyJ
KittyJ in reply to HappykindaGal

I honestly haven’t just been sitting waiting for a job to find me. You have to be able to do the job you can’t just take them🤷🏻‍♀️

HappykindaGal
HappykindaGal in reply to KittyJ

I was only trying to give you some positivity here. That humans are amazingly ,y adaptable and can do things that they never thought they could.

There will be jobs that you can do. Physically, you would be able to work for me as my other team members mentioned above have proved that they can. Another of my team has dystaunia. She has carers twice daily. Unable to use her hands etc...works with a headset and voice recognition software and is amazing. She is an integral part of our team and is treated no differently to anyone else. For her, it’s important that she does something and feels the same as anyone else and doesn’t dwell on things she can’t do.

You can do this ❤️🍾

I was diagnosed last March after being really poorly at the beginning of March and then the pain in my feet made me end up on crutches I’ve been really lucky and a dr referred me really quickly to rheumatology and prescribed me Prednisolone which made a massive impact During this time I was furloughed from my job which was in an office but also running all over and lifting product in a warehouse fro 5kg to 25kg I had to let them know I was not too good and after a couple of months of asking how I was they made me redundant I guess I knew I couldn’t have gone back to doing that job but was disappointed in them and felt was due to how I was etc anyway waffling in now 😂😂 I have a new job and it’s all worked out for the better so what I’m saying is sometimes things happen for a reason so hang in there xxx

Sky42
Sky42 in reply to AgedCrone

I love this,thank you

It’s a good thing from day one to decide although you have been unfortunate to be diagnosed with this disease, you are still in charge - don’t let it take over your life- because that way you are in for a lot of disappointments.It’s not easy when every time you move you wince...but no matter if you are diagnosed at 20 or70....still remember on those really rotten days tomorrow is going to be a better day....don’t just sit in your Poor Me chair & expect a miracle to happen.

Right now we have all got to believe that... because we are all having a rotten time.

👏👏👏👏👏👏👏

2bichons
2bichons in reply to AgedCrone

Can I ask what everyone's rheumatologist has them on for RA? I'm 10 months out diagnosed RA and mine has me on Hydroxychloriquin and Methotrexate. Anyone have long term experience with those drugs?

AgedCrone
AgedCrone in reply to 2bichons

We are all on different drugs depending on the type & severity of our disease.I was on Methotrexate very successfully for 7 years...many are on it for much longer & others don’t get on with it at all, & don’t continue for long.

Your Rheumatologist prescribes what he/she thinks will bring about the best result for you...so unless you have any unacceptable symptoms ...stick with the meds you are prescribed.

Hydroxy & Mtx together are tried & tested drugs with which many people have long term success with. ...hope you do too.

Unless you are having nasty side effects ...don’t read on here what drugs others are having success with & think you’d like to try something else.

With RA it really is true if it ain’t broke ......don’t try to fix it!

2bichons
2bichons in reply to AgedCrone

Thank you so much for your response! :)

Happy5
Happy5 in reply to Oshgosh

Feel for you, went through the same tripe of bless sincere ones wanting to help with at times weirdest of advice. Worse ones are a married couple who are on "plant diet" and are evagelical about us/ me doing it . 🙄

Fortunately they're in a different country to us so I can ignore their sermons.

I happen to be someone who naturally had a great diet mediterranean background, didn't stop me developing RA.

Reality is as individuals what triggers RA is individual too.

In the end we can onlyapply what helps us most.

Onwards and upwards ;)

J1707
J1707 in reply to Happy5

Yes well meaning family... my dad bought me lbs of plums as he read they were good for arthritis.. didn’t cure the arthritis but did cure constipation due to painkillers 😁

Oshgosh
Oshgosh in reply to Happy5

I e always eaten a healthy diet in the main.When diagnosed with auto immune diseases and lung disease Idid t eat much ,due to nausea.husband said I lookedscraggy.

Now Immunosuppressants dose adjusted can eat.

So am happier and have more energy.

Hi AgedCrone. I love that. I often think the same. People love to give you advice about what to eat, what not to eat, blah, blah. I’m sure they mean well and I often wonder if they think RA/RD makes you lack common sense too. 🤣🤣 I hope you’re keeping well during these strange times. Nic xx

MissEgo
MissEgo in reply to AgedCrone

What is frog and water diet?

AgedCrone
AgedCrone in reply to MissEgo

Believe me you don’t want to know...it’s a disgusting spoof diet you make up when “well meaning friends “ think they can cure your RD by describing how their auntie was cured by something or other.....you tell them you eat that diet.If you are newly diagnosed you will get plenty of that advice..best reaction is to gracefully thank them and then IGNORE them!

MissEgo
MissEgo in reply to AgedCrone

Has it been effective to others tho?

AgedCrone
AgedCrone in reply to MissEgo

It’s a JOKE, if you don’t understand the word spoof I am sorry..but we do have a sense of humour here.......but just to be sure you don’t spend hours looking for it in Tesco’s...there is no such thing as a Frog & Water Diet!Unless of course you catch your own Frog & start from there.

bubblyalex
bubblyalex in reply to Mermaid11

You and me both. I know it is well meaning advice but it’s no good. We should eat sensibly with a varied diet. It won’t hurt ... it is no cure🥰 I am on 30mg steroids... have gained 8kg 😥

Same, wouldn't be walking without the steroids but fat is deposited all over legs stomach face. Will tackle weight when Mt meds are sorted as only diagnosed last year and flaring

Hahaha - the joy of being relatively newly diagnosed. Everyone has an opinion. But they are (mostly) trying to help. I've learned to say thank you and nod and smile and change the subject.

The people that absolutely get on my nerves, are people flogging Forever Living/Just Juice and a myriad of other MLM products. I did tend to meet more than most as I ran business networking groups, and for a while, there were many members that has MLM 'businesses'. They are not doing it from a place of love and concern, but purely as a monetary benefit. I recall one particular person that was really getting on my nerves. He said to drink this aloe vera drink from Forever Living and my RA would be cured. I was so sick of him, I bought it. £60!!!! Of course, it did nothing. I said this to him and his reply was that it didn't work as I had continued to take my RA meds and should stop them. Okaaaaaay Doctor man that works in KFC, I'll do that then.

Of course, the worrying thing about people like him is that some people that are perhaps a little more naive and will try anything, will stop their meds...just in case. Worrying.

Brychni
Brychni in reply to Mermaid11

I try hard to ignore the diet and miracle cure advice I get foisted upon me but it's hard! Inside I am seething.also, I am not entirely sure that it's well meaning. It smacks of

"you're doing something wrong: I have something here that can fix that: I know better than you and it's your fault that you're ill."

I have been quizzed endlessly by one relative about "I wonder where this all comes from? Why have you got it? Strange isn't it?"

The most stupid comment was "Do you think it was because you were a vegetarian when you were a teenager?"

I wanted to reply that it was more likely that you (my mother) fed me a load of rubbish as a child - Nutella on toast for breakfast (no wonder I have no teeth in the back of my head.

...going down the 'mother' rabbit hole...must stop now...

Kalimera57
Kalimera57 in reply to Mermaid11

I agree with you. It’s nearly always a case of take these tablets and then take some more. I gave up coffee and alcohol and went 80% vegan and it made a huge difference ! I haven’t felt that well for a long time and my CRP dropped to 12. I do have the occasional coffee ( and then think that it tastes of cigarette butts) and glass of red. Lots of fruit,veg and beans and lentils etc. See how you get on.

ErinWilk23
ErinWilk23 in reply to KittyJ

I haven't read all others' replies, but I can assure you that diet plays a massive role in the severity of your RA. Eliminating dairy is the first big step, but eliminating all animal products and vegetable oils is crucial. This is a Wholefood plant-based diet and it can help with all manner of evils, RA being one of them. Some good places to start are Dr. McDougall's website, the Paddison Program for Rheumatoid Arthritis, the How Not To Die book by Dr. Michael Greger, the China Study book by Dr. Esselstyn, etc. Google WFPB for RA and you will find loads of information.

Hello mermaid and welcome.There has been much discussion on diet in the past. Some claim amazing results others not: I’m in the latter category.

In general the Mediterranean diet is recommended, with high oily fish content to give plenty of omega 3. Take a look at the detailed advice on the NRAS website.

nras.org.uk/resource/diet/

Hope you can soon restart your Benepali treatment and feel better.

Put diet in the search box top right and you will uncover a wealth of posts! It is a hot topic....

I changed my lifestyle on diagnosis, including diet but also sleep, exercise, stress reduction etc. And discovered that for me food does exactly diddly squat for my RA symptoms. But, and it’s a big but, my improved lifestyle made me hugely healthier, gave me energy and helped me tolerate the drugs without problem.

In terms of diet I now avoid all heavily processed food (eg good cheese is not heavily processed, but check the labels on packaged stuff as it has other things in it). Apart from that I eat what I want. But if, for example, I want a cake or biscuits then I make them myself so not full of saturated fat, additives and palm oil.

Mermaid11
Mermaid11 in reply to helixhelix

Thank you for the reply. Ive googled so much its all alot to take in. I have started a diet plan via the NHS referal scheme, its a low carb low sugar diet but ive noticed little difference yet. Might be due to the steroids though. Im waiting for my nutraphils to improve before I am allowed to get back onto benepali injections, so im suffering and feeling sorry for myself I think. Im hoping talking to people with the same disease will help me, as no one seems to understand how awful it can be living with this x

Hidden
Hidden in reply to helixhelix

Key words in your post HOT TOPIC

Just wanted to say hi 👋

I'm newish to RA and I've been trying to tweak my diet (although I've been quite pathetic about it!)

I've found cutting out sugar has helped, I get stomach and gut issues (think its because of the pain) too and I feel better when I havent eaten any chocolate 🥵 It pains me to say this as Turkish delights are heaven ha ha !

Hope you get back onto the benepali soon and feel better x

Aww thank you for replying, hello lovely to hear from such friendly people on here. Its cheered me up today 🙂 I stopped drinking alcohol at the start of the year, as i liked the odd G&T but found my joints felt worse the next day. Im going to try cutting foods out to see if that has any benefits x

Yeah I felt the same about alcohol too. I'm hoping when mine is undercontrol I can go back to the occasional peroni 😁

Good luck with the change in diet 👍

I have a glass of Red wine everyday.....my rheumy says as long as I don’t drink the whole bottle in one go...that is fine.Of course not everyone can drink alcohol...whether they have RA or not...but please don’t end up just eating stuff you think is “good for you” but you hate...life’s too short.

Eat what you enjoy....as long as it doesn’t make you feel bad....it’s fine to have the odd naughty too...my down fall is crisps & olives!

Yeah I think when I'm on some drugs to control my RA I will want a drink , im just not feeling it at the moment.

I cant give up my Turkish delights either 😁 They will be back! Life is too short

Oshgosh
Oshgosh in reply to Mermaid11

I didn’t have any alcohol for over a year,didn’t want it.Now my Immunosuppressants have been put down slightly,I have the odd weak G n Tonic,

I used to have a diet very high in sugar and I've cut out as much as I can. I started about 3:weeks ago and I have been much better. I suffer from gut and stomach issues too- again cutting back on sugar is helping although I'm aware that the RA and meds may contribute to that.

Hidden
Hidden

My simple advice do what is right for you and if it works great. One big thing for many of us is loss of taste which is horrible but if you have taste enjoy what you like.

Mermaid11
Mermaid11 in reply to Hidden

I will remind myself of that 🙂 I've got 2 young children, youngest is 3 so I've found im reaching of unhealthy snacks when I'm feeling fatigued (wrong i know) I'm trying to make healthy changes, and trying to get out of this black hole i feel im caught in x

Hidden
Hidden in reply to Mermaid11

Oh bless with youngsters too so even harder not to reach for their bits but keep a diary it helps you realise good and bad days food and flares etc and you might see what does not help.

Sky42
Sky42 in reply to Hidden

Do you keep a diary? I think it would be helpful to keep track of the good and bad but worry I would over think things and keep RA in my head too much.

Hidden
Hidden in reply to Sky42

I find a diary helps me track the bad days better but also gives me info for consultant on triggers or how the meds are working. Some days write a lot others nothing but for me it gets it out of my head and with the brain fog I struggle to remember when things happened so keeps it in order for me.

Oshgosh
Oshgosh in reply to Mermaid11

I e never eaten so much unhealthy stuff since lockdowns.I buy the multipacks of small bars.

They are usually about 100 calories, and we just have 1 each.

It’s really hard when you areathome with children.

My daughter n law says her 3 children are always eating I try and have fruit and some healthy stuff,but it’s not easy.

Stay safe

Lolabridge
Lolabridge in reply to Mermaid11

Unfortunately the fatigue and the steroids you’re taking often make you want to eat and reach for carb snacks, which are a quick fix. Try to resist if you can but, don’t stress about food generally and enjoy what you like.

Can't imagine being this ill with young ones to care for but I bet they keep you going. All the best

What lovely responses from you all, thank you. Some days im fighting the fatigue to even get out if bed but I am thankful i have them to keep me going or I could easily stay in bed all day. Hubby works 2 jobs but he has been so supportive even when he is probably sick of hearing me say "I dont feel good today" I'm trying not to wake up and say it anymore. My 9 year is very aware of how I feel & I try not to get upset in front of her. The 3 year old is a little whirl wind lol but he is a good boy most of the time x

Oshgosh
Oshgosh in reply to Hidden

For over a year I felt nauseous all the time,struggling to eat,losing weight.My husband said Iwas fat scraggy - he’s got a way with words !

I managed to negotiate a slight reduction in immunosuppressants with my rheumatologist.myappetite is back,thank goodness.

If theyTell me off for putting weight on,I’m going to carry on regardless.

I’m still doing my pulmonary rehabilitation exercises and going for a walk daily,so I’m hoping the calories don’t settle.

Take care

For some people diet does seem to help but a healthy diet with lots of fruit and veg and not too much sugar seems to be the way to go. I found the paleo diet impossibly hard and fasting, which does generally help, is just too miserable for me. I tried gluten free which was easier but it made no difference to the RA at all. I did lose a lot weight though! It’s just taking the meds and trying to keep healthy... none of us like taking these drugs but they are necessary.

Was talking to a friend who had a minor muscular problem and I said are you taking an anti inflammatory she said I hate taking pills as they are so bad for the body. I said I’ve taken 1600mg Brufen everyday for the past 6 years.... and lots of other stuff as well. She was shocked.

Yes, diet is different for everyone. But, there are places to start (the elimination diet for example.) Benefit is also tied to how deeply you go or if your lifestyle supports it. Having a family or friends can make it tough to say no to all inflammatory foods for the time you need to figure things out. My mom tried, but always gives up or adds in dairy, etc “just a little for tea,” not really understanding you can’t go halfway into it. But I get it, why should she give up things she loves at her age and with her pain? I support her no matter. Bottom line: to heal your gut can take months or years. And autoimmune dysfunction is tied to the gut. Of course, you very likely will still take meds, but in my case I’m in full remission via meds, mostly clean (I do Mediterranean-like now after years of very strict) diet and good sleep (I got a CPAP which is amazing). It’s all more related to autoimmune vs. RA in particular. Google autoimmune protocol (AIP - limited paleo) or Paddison plan (vegan) diets for competing options. Most have the baseline of start with an elimination diet for 6 weeks minimum and then eat TONS of veggies. I’d say everyone I know who did an elimination diet completely for 6 weeks saw benefit, but then you need to tweek it for yourself and that takes time. But also most people I know cheated along the way or stopped at a couple weeks. It’s most helpful to find a functional doctor to guide you through it (not sure what they are called in the UK.) My mother in law eliminated gluten for good and in only 3 days, after 72 years, she saw immediate benefit with many symptoms. No knee pain and no more stuffy nose she was famous for. Also only 1 flare in 2 years. She still takes drugs, could have flares, but is so much better. It’s a journey for most people though! It took me 3 years of deep commitment and functional doctors to figure things out. But, my mom is disabled from AS (and blind from the meds she took) and my aunt died from complications of RA at age 39. So, I had a real interest in doing all I could, if you know what I mean. :) The one thing I WILL say all studies show helps is high dose omega 3. This is clinically proven and if your rheumie doesn’t affirm this, they aren’t very good. Sorry LOL. There have been so many studies, good ones, it’s completely proven. 2000-5000mg a day. My sister has Raynaud’s and she doesn’t take any pharma medication. High dose omegas keep it at bay. Other supplements that help people are circumin (turmeric - doesn’t help me but does others and has clinical research backing), ginger, etc. You can go on any patient website and they’ll list the big ones to try over time and see if they help. Wobenzyn N is expensive but always keeps my inflammation down (I also do MTX and Actemra, but Wonenzyn drives it further down noticeably.) Its a journey you either take or don’t and good luck either way :). Do what works for you and your life. And ignore anyone who preaches! :)

JoLB
JoLB in reply to HanaleiBa

Your advice about good gut health is spot on. I religiously take a high quality probiotic and where I can include all sorts of fermented foods. It’s one hell of a journey really committing to a diet to support wellbeing and diminish symptoms but like you I have had success with it but it is extreme.

Kalimera57
Kalimera57 in reply to HanaleiBa

What is a CPAP?

HanaleiBa
HanaleiBa in reply to Kalimera57

It’s a sleep machine.

Kalimera57
Kalimera57 in reply to HanaleiBa

Thanks

Hi Mermaid11, I am sorry you have had to join us - I don’t know what it is but once you get R.A. everyone around you seems to believe that if you just do something -eat the right diet, drink a certain concoction, exercise in a certain way, take a certain supplement, etc, you will be cured. if only it was that simple. Having said that, I have found that alcohol and sugar are a problem for me and I avoid them unless I am willing to pay the price. But everyone is different and many R.A. sufferers drink alcohol without any problem. Perhaps you might keep an eye open for anything that seems to make your joints worse but don’t expect miracles.

Hi there I was diagnosed 12 years ago and I’ve been researching ever since possibilities of putting the disease into remission naturally. I’m a great believer of food can heal the body. I have removed gluten, dairy and for a period of time removed grains. I don’t drink carbonated drinks anymore or fruit juices so I just have herbal teas and I filter my water to make it more alkaline. I also make my own probiotics in the form of sauerkraut and kimchi and used to make a kefir however I removed dairy because it’s known to be quite inflammatory on the body. I don’t eat any sugar apart from naturally occurring sugars in fruits and vegetables and I also take daily probiotics and a couple of other supplements as well because research has led me to believe that autoimmune conditions and other disease can be caused by a condition called leaky gut syndrome. You may wish to have a look into it. I have gone to extreme levels however I was diagnosed with a very aggressive form of the disease and I believe the sacrifices I’ve made have improved my life massively. I used to be a firefighter and had to give up that job however I can now go running and weight training and live as active a life as I used to because what I believe are the sacrifices of to my diet. Other people may be able to remove one ingredient from their diet and it make a difference so you have to see what works for you and what levels you prepared to go to to make it work. I have connected with two ladies who have put their RA into remission naturally - one is an American lady and one is an Australian by birth who lives in the UK and is a naturopathic practitioner. I will say it takes a lot of commitment and research and no two people are the same so what works for me might not work for someone else however there is too much pointing towards certain foods that are inflammatory on the body. I also prefer not to eat any processed foods and again this is reflective on the fact that I don’t suffer any joint pain, I’ve got no fatigue and I’ve got bundles of energy now. This wasn’t the case 5/6 years ago when I had brain fog and I was tired all the time with achey joints constantly. Now I wake up and bounce out of bed. Hope I’ve not waffled too much. Please feel free to get in touch if you want me to point you in the direction of some good websites. All the best with your journey. Hippocrates said thousands of years ago “let food be thy medicine” and I believe that so much. Try to eat organic as well to reduce the toxic load on your body. Google the dirty dozen and clean fifteen. Good luck with it all

i agree with you on natural nourishing. a 5000 years Chinese Medicine "inner medicine book" says : "our (spleen and stomach) digest system changes what is not us into us !" basically, "we are what we eat".

That’s wonderful to read! I’m 68 and was 38 with 2 young children ( and a mentally ill husband who wouldn’t see a dr but self medicated with alcohol - we divorced a few years later but I think the stress of living with him triggered RA). I’d always eaten very healthily and with organic food when I could afford it. I’ve had 3 naturally occurring remissions ( 2 triggered by getting flu and happening very quickly at the onset of flu). My last remission was 12 wonderful, miraculous years. I was so lucky. I took no meds during these periods of remission.I had another stressful period in my life 6 years ago and back it came. Two years ago my consultant wanted me to go on biologics and as I have a lot of contact with young grandchildren I went 80% vegan ( I eat chicken and oily fish ). I stopped coffee and alcohol as they are inflammatory ( I have the occasional cup and glass ) . My inflammation dropped from 91 to 12 and I felt so well. Then Covid came a nd I was persuaded to have my first ever flu jab last March. Since then I have been in a lot of pain - both knees, hips and feet, had chronic anaemia as a result and a CPR of 185.

Someone on this site posted that their RA had started with her first ever flu jab and I googled and found that there can be problems. I mentioned this to my lovely GP and she said, ‘it’s a known risk.’ I feel very concerned that there seems to be no awareness of this. I suppose it’s a minority of people but even so this should be told us so we can choose.

Your post has given me a renewed determination to get myself better . My inflammation is still high at 80 and I long to get back to long walks and yoga . Please could you send me the links you mentioned? And info about the dirty dozen and clean 15.

Long may you bounce out of bed!

What a lovely message thank you so much! I am a HUGE believer that stress plays a massive role in dis-ease of any sort. My first flare happened following the sudden loss of my father. It’s absolutely wonderful to hear that you’ve had such long periods in the mission,well done you! It’s an absolute pleasure to meet you 😊 In my initial reply to the post by Mermaid I omitted to mention that I personally believe it’s not just about food and diet, but your mental health, physical health, stress levels and outlook on life as well. I have literally transformed the world I live in to make my healing journey take the path of least resistance. I don’t know if you’ve heard of grounding for example or earthing? We should be walking barefoot outdoors to benefit from the earths healing powers however in the UK that’s just not practical due to the weather so I purchased a grounding sheet which is a sheet that I lie on in bed. It plugs into a socket although you don’t need to have the socket turned on as it’s not electric. It basically earths you so it allows the body to naturally heal. I’ve also got purple positivity plates which encourage the body’s natural healing processes and I drink alkaline water. The list goes on and on and on 😊 if you’d like to chat more offline my email is energytoheal @outlook.com. Happy to give you any advice and details of websites and the clean 15 etc. And share more of my healing journey. You’ve taught me something too as I wasn’t aware of the implications of flareups following the vaccine. To be honest though I won’t have vaccines just for personal preferences on what I have found out get put in them. I boost my immune to fight off any nasties! A bit of a contradiction but I’m doing something right!! Speak soon, Amanda

Good to hear from you mermaid, welcome to the site... I have been down the natural path, (I was diagnosed 10yrs ago, put onto biologic quite quickly as I have moderate to severe RA, due to infections It stopped working after 5yrs) at this time I started to research anti inflammatory diet, cutting out, grains, gluten, dairy & sugar...plus others with the connection of leaky gut!! I went to see a functional therapist. It’s a big commitment & difficult if your cooking for other, partner, family etc.. one big concern is cutting out beneficial food groups. Anyway throughout my Rheumy was very supportive as he has seen benefits for some, however daily life became a huge challenge for me & I am now back on a biologic, starting to tapper off the steroids & relief is settling in.. I now agree with many others here, a good varied diet, ie Mediterranean style diet, good fats, good variety, fish etc and very importantly is getting on a treatment plan that works for you & this can take some time as we all know... the only thing I would add is I now find supplements a defo for me & cutting out sugar, thankfully I don’t have a sweet tooth, but over Xmas a few chocs here & there, mince pie etc & yes I did notice it., my husband is a coeliac so at home everything is gluten free & has been for over 20yrs (so I don’t feel that’s my enemy)! Hope you find this helpful, I’m not saying is doesn’t work, maybe try it out, but a good varied diet with fruit, veg, fish etc is beneficial.. all the best to you going forward & look forward to your future participation x

Hi Mermaid11....Sorry to hear about your infection and subsequent flare. I have been on Benepali for 3 years and it’s great however I suffer with infections. More recently had my vaccination and it sent body into a small flare!

I have researched so much on diet and foods. I also have been in touch with the Margaret Hills Clinic in Kenilworth. Margaret herself was a nurse with RA who controlled it through diet. She started support and then the clinic. She has now passed and it is run more as a health shop and nutrition info these days (I think).

Before going on meds I restricted diet and watched what I ate. I was still in constant flares. What I did notice if I had a heavy sugar day or over did it with the processed foods I felt worse with it.

It was a few years trial and error with meds until I was put on Benepali and this was a life changer.

With regards to food, again I have noticed too much processed food and one thumb joint (which has suffered with damage) plays up. I do my best to to stay away from processed food and limit my sugar. For me I do notice the difference but for others there seems to be no difference.

Best wishes x

Mermaid11
Mermaid11 in reply to HevJ

Thank you for replying. Ive noticed that stress, lack of sleep & alcohol affect me. I am in the process of cutting down/out on sugar (which isn't easy) the benepali was working for me, but like you've said ive had constant infections. Not sure of you've noticed any other side effects? I develop a cough a few weeks into starting the injections, I would cough so much id throw up. The Ra nurse thought it was due to reflux, but since not being on benepali for 6 weeks now I've not coughed once, or been sick, and the phlegm that was lingering in my throat has cleared. Im wondering if my consultant will put me on something else, just waiting on my nutraphils to improve so I can be put back on meds. While I wait its back to the steroids 😪

This is a great book. By the brilliant Tim Spector of the Zoe App. It's absolutly fascinating. Longitudinal studies about diet and why our processed cheese is the work of the devil, but unpasteurised is really good as it has moving bacteria on it. That's not all it's about of course. It's about genetics, microbes inherited from your Mum which you're stuck with now (hence why some babies can be fat) etc... I'm halfway through it now and it seems the upshot is, that if you want to reduce inflammation, you have to change your microbiome, which is really hard and actually, could be impossible due to whatever you inherited.

In otherwords, you could do the very stringent AIP diet and it does absolutly nothing, except cause misery as it's a boring as hell. If the microbiomes are shot to pieces, it will make zero difference to your inflammation levels.

It's a really interesting read.

amazon.co.uk/Diet-Myth-Real...

His other book, spoon fed, is also brilliant!

I certainly believe in him much more than some of the restrictive diet people. I tried all of that with zero success.

And far too much misery! Life can be tough enough without restricting everything that tastes half decent 🤣

Hi Mermaid, welcome. Firstly would like to say although you are not lucky being diagnosed with RA, you really are with regard to the many medications that are now available. Thereby saving your joints etc. With regard to diet, like someone else said, nothing helped me and I have tried everything 😁. However, this is your journey and no doubt will want to experiment yourself, we are all different. Take care

Welcome Mermaid, this is a wonderful site with lots of great help and a wealth of experience behind it. It's also a very caring site so you need never feel alone with your RA.I tried the paleo diet last year for six months which was very restrictive. It worked at first but less and less. I've also looked at the Paddison one but haven't ventured into it as it's also pretty restrictive. I agree with AgedCrone that eating sensibly is the best way and I'm especially very careful with gluten and sugar which are both meant to be bad for inflammation. But who knows? There are a million different ideas out there. I hope your flare settles so you can get back to benepali. 😀

Morning all, I’ve been trying to lose weight after being on steroids for 6 months. I think cutting out the sugar and carbs has helped the morning stiffness a bit, although this could all be in my mind 🤷‍♀️ But whatever happens, if my weight goes down it should be easier on my joints. It hasn’t helped the crushing fatigue yet, but I’m trying to remain positive.Stay strong guys, this is our lifelong condition unless they miraculously find a cure, so having a chat on here and swapping stories from time to time with others who actually understand is a lifesaver. ❤️

Welcome to the forum. All I can recommend is sensible eating, not too many cakes, sweets, biscuits etc, plenty of protein with greenery and above all whatever exercise you can manage, preferably outside for at least an hour. I take a low dose of methotrexate and have luckily not had any lasting side effects and I believe that my daily exercise helps to metabolise the nasty effects of medications. I have no idea if that's scientifically sound but I know that if I am inactive everything gets even worse for me.

Hi, I 100% believe diet can have an effect but unfortunately it has to be really extreme. I lived on a cocktail of MTX, hydroxy and sulphasalazine for years. Over time the side effects became worse and I searched for a different way. With the help of a naturopath I completely altered my diet. I began to feel improved within weeks and slowly came off the drugs and have remained drug free for 7+ years. However the diet involves no gluten, no dairy (goat and sheep are OK), no refined sugar and I mean none. You can’t just stop eating bread and drop the sugar from your tea. My diet is ultra extreme, I have had to find ways to adapt endless recipes and be very careful when eating out (anyone remember those pre-covid days). I appreciate that for most people the extreme nature of it is impossible to maintain but I am lucky my life accommodates it. I think this is why it isn’t in the treatment plans because unless you can go “full out” it doesn’t have much impact. There is something called the Wahls protocol, Terry Wahls is a doctor debilitated by another Auto immune condition, MS and it explains how she made radical changes to diet and lifestyle to leave her wheelchair behind. I wish you well, such a horrible disease and you have to manage it with whatever you can. I feel blessed that diet and lifestyle works for me but I don’t intend to preach to you or anyone and if you need the meds to make life bearable that is your decision and no one else’s. X

helixhelix
helixhelix in reply to JoLB

I also personally believe that there is more an one type of RA. And some do respond well to diet and others don’t. Please don’t imply that it is my fault that diets failed with me because I didn’t follow it well enough.

Who can go through life without a visit to The Ivy (and no friends!!!). Sounds a miserable existence to me. I'll stick with the biologics and my friends and social life 🍾🍾

JoLB
JoLB in reply to helixhelix

No offense meant, I don’t think there is any implication in my message that it is your fault but I take on board that diet doesn’t have the same impact for everyone (as my message says “I feel blessed that diet and lifestyle works for me” . Everyone on this site has experienced life with RA, we all know the challenges and I am not trying to underestimate how difficult life can be, I too have lived it and continue to manage it. We need to show kindness and support and if sharing my story in response to a direct question helps I am happy to do so. I am sorry that it has obviously upset you. Can I suggest you re-read my message, especially the last sentence to realise it is written without judgement. I genuinely wish you well, we are all in this together.

helixhelix
helixhelix in reply to JoLB

I actually wasn’t feeling offended by you at all. It is more of a general thing that phrases like “unless you can go full out” are quite loaded comments. People can go “full out” and it still not work. So the implication is that they are somehow at fault rather than whichever process it is that is being advocated.

If it works for you that is truly wonderful, but please be aware that for an awful lot of people no matter how hard they try, or how rigorous they are, it just doesn’t. Many people have expressed the same reaction as me, so just do think about avoiding this. You may not think you are being judgemental, but what you are writing does carry that tone,

JoLB
JoLB in reply to helixhelix

Yeh, I get it. I accept potentially badly phrased on my behalf but really trying to acknowledge that none of it is easy. Managing and coping with RA through meds is tough and managing and coping with RA through diet (IF you are lucky enough that diets influences it for you) is tough too. Not looking to upset anyone, especially as this forum is supposed to be about support. Apologies to anyone who is offended.

helixhelix
helixhelix in reply to JoLB

Thank you for that. 😀

Welcome. My rheumatologist told me to try and have as varied a diet as possible including as many different veg and pulses that I can find as that will improve gut health, and that will help my RD. He said they do not know exactly the link between gut and RD but there is one. He warned me against supplements. The only thing that I know definitely makes a difference is sugar. That does affect me so I avoid it. Also find too much bread makes me feel more fatigued, so all thing sin moderation otherwise for me. Good luck on your RD journey.

Mermaid11
Mermaid11 in reply to Wobbies

Thank you its interesting reading everyone's comments. Most people find sugar is a trigger, so I am trying to cut down on that. I also find stress, and lack of sleep dont help. Mornings are the worst, even now ive been up for hours with the kids and im in pain. Im so glad I found this forum, its nice to be able to ask questions and not feel judged for saying 'I dont feel great today'

I didn't cut anything out but increased my water intake as I read an article that said when you are dehydrated the body takes fluid from the joints. It made a huge difference & I find on days when I haven't drunk enough I really suffer next day.

Kalimera57
Kalimera57 in reply to Knitmare

Great advice!

I was keen to try to change my diet to improve my symptoms, I cut out tomatoes, peppers and potatoes for 10 months but my symptoms worsened so took medication and started eating normally again. Having said that I do try to avoid sugars and processed food and was advised to do this by my consultant also. I think a balanced diet with as much fresh vegetables as you can manage is best for health in general. The occasional cake or glass of wine won't do much harm either

Also, check out the latest info on Vitamin D in relation to Covid. It is also is a powerful antinflammatory. The government is finally advocating that everyone should take a supplement of at least 4,000 all year round. There is a lot about it in all the major newspapers.There have been complaints that it has taken so long for the government to get on board with Vit D. I think the reason is simple: it's just not sexy and dramatic enough for Boris Johnson to advocate something as simple as Vit D. Also, unless he knows a producer of Vit D whose pockets he can line, he's not interested.

Mermaid11
Mermaid11 in reply to Brychni

Its interesting you say that, I received the vit D tablets I requested online when the government shared the link to register. They arrived yesterday, I wasn't sure if I should speak to the rhemotology team first before I take them

Except that's exactly what he's done. Recommended Vitamin D

hi, there

I joined this time last year following 1st strong RA flareup.

just to share what i experienced...

For over thousands years, Chinese Medicine advises, all diseases are result of lift style including the famous saying " we are what we eat" . I have been on very western diet for many years including dairy products and high meat consumption etc....after the RA diagnosis, over last 12 months, I went to organic and more plant-based diet for nearly, some intermittent fasting, slept a lot, doing Qi Gong everyday and reduced stress in life... i believe these all help detoxify and relax body. also, i took some herbal supplement including mushroom powder which is said to help regulate immune system. RA is not without immune but over reacting immune system. Mushroom is said to help regulate it.

Also, keep warm during winter and windy days, it will help reduce any harsh external attracts to the body. Sun bathing back of the body during summer or sunny day any time (with or without cloth on whenever is suitable)....i also take lots of vitamin D and probiotics. And reduce sugar intake dramatically..

In addition, in Chinese Medicine, we do not distinguish physical conditions and psychological status. it is believe to be interlinked. When we are unhappy, anxious or angry etc, these all makes us feel there are "knots" in either in the stomach or chest... there are causing stagnation in our body. I was under extreme stress 12 months ago just before the flareup …Qing Gong helps me breathing better and be more cool on daily basis.

In our culture, diseases do not happy overnight, they accumulate over time. so, to cure them properly, 30% is initial treatment, 70% is for maintenance and nourishing body.

All and all, after changing life style i.e. sleep more, eating better and relaxing exercise, I am now in remission and free of RA drugs now. and now it is my life long job to keep it like this. i will continue researching more natural treatment on RA …. Prayer to you all.

A great post with great answers.

Hi Mermaid11, all great answers here, lot of good information and great advise.Since everyone already talked about food here, so I won't say much about it.

One thing I did find that along with good , healthy diet, fasting or intermittent fasting also helps. Specially during flares and regular intervals. In general it improves digestion and in turn gut health. There is lot of information out there regarding different ways of fasting. You can do intermittent fasting everyday ( 8/10/12 hour windows) or once a week for whole day or 5 days in a month. Lots of diff ways it can be done. I have tried all 3 and found them beneficial. As with diet advise above, you will have to find out what works for you with trial & error.

In the words of my Rheumatologist “you will find someone who tells you that you can cure anything with a lettuce leaf and if that were the case every Doctor would be subscribing it” I took it that it’s the drugs we should rely on lol

Personally I’ve changed my diet a few times over my 2years since diagnosed (not due to my RA but trying to lose weight 😳) and I’ve notice no changes. But if things work fit you then go for it 👍

They are not allowed to say you was dismissed and why by law , you can tell them yourself if you choose , a lot of companies do take on people like us so there will be something for you when you feel you can return

For me personally, healthy diet (mostly!), no alcohol (although I did have a very small tipple of bubbly when my daughter became engaged), drastically reduced sugar intake as sugar is a big no-no re: inflammation, turmeric powder, kefir, kimchi, vit. E and RA customised exercise (various types). I've been on methotrexate and hydroxychlorine for 6 years and now about to try a second reduction in strength of methotrexate. BUT, everyone is different and it really is a case of trying to find what suits you best. This seems to be working for me but I'll not be as I used to be ever again methinks. I wish you success in finding what suits you to make your journey through this as good as it can be.

If any is considering a diet change please ensure you speak to registered/certified person (not all Drs are in nutrition). Anyone can gain experience but they aren’t necessarily experts and are more interested in making money than helping you.

In this day and age there is so much misinformation flying around and it’s important you get information from reputable sources. Anyone touting nutritional information should be prepared to back it up with evidence based science.

Hello Mermaid, welcome to the forum. As you said, diet is specific to individuals - I keep a food diary and monitor what foods causes any joint pain/flares. Don't deprive yourself as so many naysayers on google etc. could drive you nuts! One would say eat tomatoes, and another would say don't, and on it went, it would lead me to feel very stressed indeed. In essence, eat well, your fruit, veggies, pulses include all food groups...proteins, fat, fibre etc. - just monitor what works for you. - All the best, Hessie 🙂

Try once a week im haveing it twice this week special occasion

1,rich in vitamins

2, rich minerals

3.great source of protein

Heart, liver ,lungs,

Of a sheep

HAGGIS,

Tatties and neeps

The neeps

1,Antioxidants could support the immune system

2.good for the heart

3,

Great for the bones

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