Dietary benefits

[danh1977]

Hi, I'm Dan, I've been suffering from RA for a decade now. It's located in my hands and wrists, praying it doesn't spread. Been taking hydroxychloroquine for a few years now with ibuprofen. Had naproxen and diclofinac. Really interested in other people's experiences who may be a similar age with their tips for improving things and especially these dietary benefits which I'm looking to explore rather than the horrible drugs that only seem to be on the table at the consultants.

[popsmith1874]

Hi I think you might need dmards as I don't think your disease is under control, I would contact your Rheumy consultant and see what they say

[danh1977 in reply to popsmith1874]

Hi, thanks for your response. Can you give me an example of what the DMARDS are please?

[Izabella81 in reply to danh1977]

Methotrexate is a gold standard in dealing with RA...

[danh1977 in reply to Izabella81]

Hi..it's just the alcohol stoppage that is a deterrent with that one. I'm not a huge drinker but do socialise so looking for an alternative that's as good

[Hidden in reply to danh1977]

Hydroxy is a dmard. Are you seeing a rheumatologist? Maybe you need to add another dmard to your hydroxy.

My hubby has been on naproxen & hydroxy for the last 2 years. He has just added sulfa to his meds.

All the best to you

Sue

[danh1977 in reply to Hidden]

Hi Sue,

Been on sulfa but stopped as trying to start a family and got a bad skin condition from the naproxen. My doctor has suggested gold injections amongst others.

Take care

[popsmith1874]

I think your on 1 already as I think hydroxocloroquine is one but not certain, methetrexate and sulfazalasine are 2 more, I failed on the 3 off them and am on a biological drug now (Benepali) along with mtx 20mgs

[danh1977 in reply to popsmith1874]

Hi, yes tried Sulfasalzine but affects fertility so stopped as trying for family. Don't like the restrictions of Methetrexate (No Alcohol). I've recently been offered gold injections as they seem to have the least side effects. Very interested in trying dietary changes.

[nomoreheels in reply to danh1977]

Not wholly correct, as ARUK explains

"Sulfasalazine can cause a fall in sperm count, leading to a temporary decrease in male fertility but must not be relied upon for contraception. The effect on sperm count is reversed if treatment is stopped, and research hasn't shown this to be a problem. You should discuss this with your rheumatologist, but current guidelines advise that it's not necessary for men to stop sulfasalazine before trying to father a baby. However, if you're on sulfasalazine and you've been trying for a baby for a year or more, you should discuss this with your doctor and arrange to see a fertility specialist to rule out other problems." arthritisresearchuk.org/art...

Re MTX & alcohol, it's really dependant on liver count. Many people can continue drinking alcohol if their LFT's aren't raised. I think drinking sensibly is often accepted by Rheumy's. I don't drink alcohol because it doesn't like me, a glass of wine & I'm not safe to drive, 2 glasses & I'm ill. I had one consultant who didn't believe it was possible to live in Spain & not drink. Whenever my LFT's were out of my normal range he reminded me not to drink spirits, keep to wine & beer!

Gold injections (myocrisin) was one of the first treatments for RD, other than anti inflammatories, but is less widely used thanks to the advances made in newer DMARDs. Also more painful administration, side effects & comparative limited response means they're not used so much nowadays.

Dietary changes are definitely helpful as is exercise & but do your homework, not everyone responds the same as there are so many different forms of the disease even if you're diagnosis is RD. I do well on the Mediterranean diet having lived in Spain it was my daily diet anyway. I don't react negatively to nightshades though others do, don't quite understand except it's relative to our digestive system.

[danh1977 in reply to nomoreheels]

Thanks for your response. Hope to end up in the med when I retire too

[nomoreheels in reply to danh1977]

Just a thought Dan, because of a different illness my h had to stop drinking alcohol for a while whilst his meds & his response to them were sorted. He didn't drink spirits so it was finding lager or beer with little or no alcohol (0.5% ABV or lower). Low alcohol wines at the time were few so he just resigned himself to not drinking it but found there were many beers he could choose from. This was in Spain where the choice was greater at the time & whilst not all were to his taste he did find 3 or 4 which were available in most bars. Here in the UK the choice is now much better & now & again he'll choose a low alcohol over 'regular' beer if drinking during the day.

This website may be of interest to you if it's thought your best option is MTX, really just to use as a guide to what's available for you to try nowadays alcoholfree.co.uk/alcoholfr...

[danh1977 in reply to nomoreheels]

Thanks so much for that...will check it out now

[Downtime in reply to danh1977]

I think dietary changes are always worth a try. I went gluten free with no improvement, but cut out red meat and reduced sugar and felt better. I'm on methotrexate and Brufen slow release. I do still drink red wine, quite a lot sometimes and it hasn't affected me yet.

[danh1977 in reply to Downtime]

That's good to know...I've had to give up lots of activities I like to do but give up red wine, it makes me emotional to even consider

[Hidden]

There are better drugs coming out all the time dan. DX aged 36 in 1977. 66 now. Tried all sorts of meds, but also have Vasculitis, so can now have Rituximab. Diet never made an difference to me, but I do take ADcal D3 for my Osteoporosis and Omega 3 capsules for my joints. Leflunomide and Methotrexate are 2 Dmards. They help to reduce deformitities.

[danh1977 in reply to Hidden]

Hi, Yes I take cod liver oil and turmeric supplements but I fear my condition may be getting worse and I want to try anything other than the drugs that get proposed by my consultant. I've been quite lucky as the illness seems to have been under control for a good few years with no signs of getting worse. I just want to do what I can without drugs that are more life threatening in the long run than the RA.

[Hessie5 in reply to danh1977]

Dan make sure you take a good quality fish oil. I know it's expensive but When I researched this range came out tops minami-nutrition.co.uk/webs...

As someone who never took even a paracetamol! Was gutted to find I am on a cocktail of drugs since diagnosis back in Nov16. I dont smoke, drink and ate pretty well - so it goes to show such is life.

I honestly believe you need the meds but couple it with eating well is what I pray gets me through, as well as a positive outlook.

I am also am identical twin (God grace she is fine) 😊

Wishing you well!

[danh1977 in reply to Hessie5]

Thanks for the link...will have a look. I try to be positive too. Look after yourself! Dan

[Hidden]

Hi..I wrote a moan this morning!!! If your medication works & dosnt give sideaffects I would stick with them...as for dietary my view is once you have this condition its not going away.healthy food & supplements are great but so is warm sun.vitD. 😀 my hands limit me to do much.but I can say swimming helps.pain eases ..I now take morphine.not of choice but only thing that works.trouble is addictive & as time goes on it will make my body crave more & need more.so on that final note of cheering u ☝.better the tablets you know.x

[danh1977 in reply to Hidden]

Thanks for your response, Sorry to hear you have to take the morphine. Your pain must be awful. I feel thankful now. I kind of agree with you about food making little difference but haven't tried it so want to give it a go. Will try the gold injections I have been offered. Look after yourself!

[MickeyJoints in reply to Hidden]

Crikey! They gave you morphine for a chronic condition, from which you could get into remission?

As you note, you need more and more. Really, try to stick with the current dose and not increase it. I know it's difficult, but take it from me who has been down that road - it's unbelievably nasty.

The only time I've accepted for the last 20 years is for renal colic.

MJ

[Hidden in reply to MickeyJoints]

I totally hear your reservations about morphine but while RA can (and hopefully will!) go into remission, the damage it causes in some people can be excruciating. I was always against stronger medications....until my jaw fused and collapsed.

[MickeyJoints in reply to Hidden]

I think we agree then - for short term bad trauma use, yes. OR renal colic...

My concern is that there's nothing else after that. And once you get wrapped up in the warm comfort of opiates, it's very hard to get out of the embrace. I'm not saying never, but care is needed. Trying to get off morphine with RA would be double trouble, as far as I'm concerned.

I'm having a flare now and it's horrible - tramadol just takes the top 5% off. And that's a weird drug, too.

[nomoreheels in reply to MickeyJoints]

Hidden also has OA MJ so maybe that's why she's prescribed morphine. Little else other than pain relief, NSAIDs & exercise for it I'm afraid. I'm also prescribed pretty strong pain relief for OA not my RD.

[MickeyJoints in reply to nomoreheels]

Ah - thanks, new information.

Not having OA I'm not sure of the signs and symptoms, but I can't imagine it's easy (read: quite a nightmare).

[nomoreheels in reply to MickeyJoints]

No probs. It's ok once you get the balance of meds & the right exercises right but still, I wouldn't wish it on anyone so I hope you don't ever have it.

[Simba1992]

I can only talk from my experience. Unfortunately the place I come from is quite different. I am much older and not a man. There are so many forms of the disease and they have different progressions. I was diagnosed 2015 and have successfully been controlling my seronegative RA with AIP diet, LDN and supplements. I've been fortunate not having to go to meds, yet anyways. There are eliminaton diets that have helped many with decreasing inflammation and pain, others have had less success but there is no guarantee with meds eather.

Do you have a diagnosis of RA? Are you seronegative or positive, what levels have your inflammation markers been on? Are you positive with CCP autoantibodies. All these facts play a role when choosing your line of treatment.

The antiinflammatory drugs you are taking are very hard on the gut that does not help to make the normal immunesystem stronger, on the contrary. A healthy gut and microbiome gives your immunesystem the best support.

[medway-lady]

If diets worked then I think the NHS would be not prescribing medications but telling people to just avoid this or that. In my view and of course its subjective a disease cannot be "cured" by avoiding any particular group of foods. In my case I'm Celiac and promise gluten has not been chewed by me for years I still have RA and take Leflunomide which has put my RA into remission. My advice would be to keep active and I'd say I do not suffer with RA. I live with it.

[Hidden]

Welcome Dan. I think there's a balance to be had with medication, diet alongside alternative and complimentary therapies. I do a combination and find it helps me manage my RA. I certainly couldn't have managed without my medication though.

Have you looked at this website; arthritisresearchuk.org/art... ? This gives a balanced view point.

[danh1977 in reply to Hidden]

Thanks, will check it out

[Witness2]

Plenty of sensible advice from people with experience Dan. All I can add is that for some of us, myself included, the RA appeared to quieten down when I adhered to strict diets (some, not all) and believe me, I was encouraged to try some really whacky things! But after a decade avoiding meds, I realised that I had a massive number of erosions and subsequently required extensive surgery on both hands. If you diet then at least follow Simba's advice and get your bloods tested regularly to track progress or signs of disease progression. Mine started acutely at 23 and I'm now 60. None of the DMARDS worked for me, you name it, I took it, hence my decision to go it alone. Now though I am on Biologics and have great joint health but the trade off is endless upper respiratory tract infections. At my age and after all the experimentation I'm accepting of this state of affairs - acceptance doesn't mean I'm happy about it, just that I accept the reality of what's happening. You are much younger and it must be a real worry for you. I hope you do lots of research and find a way forward that you feel secure with.

[danh1977 in reply to Witness2]

Hi, thanks so much for your feedback and concern. Going to do lots of research and try different things. People have been very forthcoming and helpful on this site, it's great to see. My reason for joining is that my condition has been fairly stable and controlled by the drugs but just having more flare ups in certain joints recently and it's worrying. Keep positive and look after yourself 👍😊

[Witness2 in reply to danh1977]

Thanks Dan. I wonder how well controlled your disease actually is. Your flares suggest that more should be done. Good luck!

[danh1977 in reply to Witness2]

I'm back at the consultants on may 11th. Hopefully get something sorted

[Stargazer]

Hi Dan have you tried the paddison programme, look it up on your computer, I have found it very helpful and has cut down my pain by 50 per cent. Well worth looking into.

[danh1977 in reply to Stargazer]

Hi, yes it's been mentioned so currently looking into that. Thanks for your input

[DBM1955]

Hi Dan! My husband has been on many meds as he has had R.A since he was 27. He is know 61. He was on gold Naproxin and many more, one being Methotrexate tabs for 8 years. He continued to have flares and bad days. Recently I asked about Methotrexate injections. He has been on this for 6 weeks. 80% improvement. We both wish he had this when our children were young. My main point is enjoy life and drink in moderation.

Take care Dan x

[danh1977 in reply to DBM1955]

That's a very good final point, thanks for taking the time to respond. Nothing but lovely helpful people on here since I joined yesterday. Lovely to see! Dan

[RMDETJ]

Hi Dan, I've been on Methotrexate for 11 yrs and a biologic for about 3. I'm 42 yrs old. I would be worried about long term use of anti-inflammatories like Naproxen as they are terrible for your stomach. It's really much better to get on a drug regime that controls the RA, otherwise it can cause irreversible damage. I have been symptom free ever since I started the biologic. I know wanting to start a family is an issue, and my consultant would have put me on sulfasalazine instead of methotrexate for that reason if I hadn't finished childbearing. And I have not found dietary changes miraculous although it's obviously a good idea to eat healthily with a chronic condition! All the best - in this day and age you should be able to live well with RA.

[Sassychick]

I was diagnosed almost 3yrs ago and opted against meds (except Advil) and worked with a functional med dr and had extensive blood work done to find out the foods that cause inflammation in my body. I changed my entire diet and was strict as can be and never felt better in my life. Ginger green juice daily, shots of tumeric from a local juice bar, lots of greens, walnuts, it worked amazing for me. No flares, no fatigue, high amounts of energy... I *know* diet plays a HUGE role in controlling flares / inflammation. Then the holidays came around and a splurge here and there for me off track, basically rebelled against my body and paid for it. I'm about 80% back on track but still having flares in my fingers daily. Hoping I can "flip the switch"' again to go 100% all in because I know firsthand it worked for me. I've been so scared of the meds they have rexeommended bc I'm a research fanatic and suppressing my immune system just scares me. I'm worried I'm exchanging one thing for something else.

[Sassychick]

I would personally recommend getting your blood (and stool, I know... gross!) for foods that may be a trigger for you. Gluten as you prob know is a major auto immune trigger, as well as sugar. Red meat is as well. Triggers also for me that broke my heart was artichokes (which I love), shrimp (another fave)... there was more no foods than anything else, but I know if I eat them... to expect an attack.

I also do omega 3 (fish oil), tumeric, and a probotic every day.

The first thing to helping get the inflammation under control is to help heal the gut.... how I felt clean eating and juicing compared to not is night and day.