Autoimmune diet protocol? Stool analysis? Fixing the gut?

[Yansouneh]

I now have my prescription for methotrexate. Sitting in my kitchen cupboard. I should have started but I'm resisting it. I feel like I need to exhaust all diet possibilities first, but I'm racing against the RA clock. As I write this I can feel burning in my ankles and elbows and I know it hasn't gone away yet.

I'm already on sulfasalezine and hydroxychloroquine. I really don't want to have to take mtx as well. I'm worried about immediate side effects and long term side effects. Although I've already had lovely advice from you guys about that.

I understand from many reputable sources that 80% of our immune cells are in the gut. That if we can get our gut and digestion working at optimal level, that it could stop autoimmune problems. But of course fixing it is different for everyone due to different microbiome in all of us. I'm eating as close to the autoimmune protocol diet as I can (not given up oats yet) which cuts out LOADS of food types. I won't do this forever, just till I figure out what my bad triggers are. I have improved in that I don't get stiffness anymore. But pain is still there.

I'm thinking of having stool analysis done. Wondering if anyone else has done this and whether it helped?

Has autoimmune diet worked for anyone?

Thank you for reading.

[happytulip]

I'm not commenting on diet and RD because it's a minefield but last year a study started at the John Radcliffe Hospital. It's looking at the gut biome of patients who are newly put on MTX for RA. It might be worth contacting their dept and seeing if they will share anything with you, they may offer you some information about what they are looking into. If that is of interest?

[Yansouneh in reply to happytulip]

Interesting. Thank you.

[allanah]

Please take your prescribed meds to stop joint erosion xxx

[Angjoplin in reply to allanah]

I second this. I'm sitting here, 40, and near complete loss of joint spacing in both knees and elbows.

[helixhelix]

I had an analysis done of gut flora. And the problem is that all it could tell me is that despite all the drugs I take (including MTX) I have a healthy range of organisms - pages of names of the different ones and amounts of each. Perhaps other firms (pretend) to give more clues about the meaning but I think with the level of knowledge still being developed only snake oil salespeople would say much more.

It didn’t surprise me as I have a very good diet, and was pleased to know that I am harbouring a healthy zoo, but didn’t get me much further than that.

What many people do is to start on drugs and lifestyle changes in parallel. Then once the disease is controlled work with their rheumy to taper off drugs. This appears from stories on here to have a greater chance of success. Which is logical really as if your disease is wildly active/out of control then expecting diet to be able to conquer that is a big ask. But much more likely to be able to keep it controlled once the drugs have done their thing.

[Yansouneh in reply to helixhelix]

Thank you.

[Dobcross1]

I really hope you do find an eating regime which helps your RA. I know diet does help some people. However, I'm not one of them! When first diagnosed I did not want to take methotrexate, so gave up gluten, dairy, sugar, alcohol and became vegan. I followed the Paddison diet and had (very expensive) blood allergy tests (Alcat). I also visited a complementary health clinic and took all the things they prescribed to clear my gut etc. I did all this strictly for over 6 months and all that happened was I got worse and worse and lost weight which I couldn't afford to lose. Eating became a nightmare as my diet was so restricted. My husband was distraught at my appearance and that's not like him.. I eventually gave in and took the methotrexate - I've kind of now gone the other way, in that I eat far too much chocolate and sweet stuff and the only thing I try to avoid is anything with milk in as I showed a severe intolerance to Cassein, a milk protein. I also still take a lot of supplements which I believe help me. So for me personally, what I eat makes not a jot of difference - and I'd rather take the medication and live a full life than suffer as I did. But that's my choice and I think we should all try whatever we need to, to find what works for each of us individually. I wish you good luck - and finding out about our gut flora make up can only help you and give you more information.

[Yansouneh in reply to Dobcross1]

Many thanks for sharing your experience, I really appreciate it.

[Fra22-57]

My advice would be to just try and eat a healthy diet.Try the methotrexate and if you get problems switch to something else.Things can be a battle so wish you well

[Knit12]

We have all been where you are but in hindsight nobody really knows what our triggers are and we don’t want to take all the meds but the reality is you have this and you need to take the meds to stop the erosion of your joints. Not every medication works for everybody but you have to try and find the combination of what works for you

[HappyD34]

Hi, well as a newbie I can totally understand how you feel , I was avoiding drugs thinking changing diet would help etc etc. However , the amount of people inc my rheumy who said take the drugs to stop erosion now because when it’s too late, it’s too late. Absolutely no way of reversal. It was an eye opener to me and the push I needed to make that call and call for meds. None of us like the idea of pumping drugs in our bodies but we have a choice, that’s the important bit. The reality is if we don’t take them we may regret not having done so, if we do take we have a better chance of getting things under control and then hand in hand work to have a good balanced health diet. But, in my humble opinion have the odd treat. Best of luck 👍😘

[Gilliancheche]

I tried leaving a few things out of my diet and coincidentally had a very bad bout of food poisoning. Following this I investigated the healthy gut biome restricted my diet and gradually reintroduced items. Over a period of 28 months - 2 years sorted my digestive situation but sadly my arthritis just got steadily worse. Having said that if anyone has any diet ideas I will always give then a go. Am currently on Methoject

[Jturner1]

I have been on methotrexate for over 27 years. I’m only 62. It has benefits too. Did you know it helps with all inflammation such as heart etc. Which is root cause of all disease (inflammation) I hate it too but keeps me running and active

[dawkin_S]

I would second the idea to just take the methotrexate, get stable, eat a healthy balanced diet and then you can work on what food helps/hinders without the 'silent' damage going on. If you get to remission you can then try tapering off your drugs with your doctor. I was very loathe to go on medication at first, but eventually did go onto methotrexate and it has been a life saver for me in terms of stopping pain and minimising flares. Really wouldn't recommend delaying to be honest, as damage is being done all the time without you knowing it. Best of luck and I hope you have some relief soon xx

[AgedCrone]

If your rheumatologist prescribed methotrexate he obviously thinks you need it-it won’t help you sitting in the cupboard will it?

Please do take it....with RA nothing is simple...but when a drug works it is life saving,

Do remember.......many people here take it ......I took it myself very successfully for seven years.....So, pluck up courage & get some relief.

You must realise from reading all the posts here ...everybody who tries to get relief from R.A. solely on diet .....fails.

[helixhelix]

Here is a link to an old post from a young woman that I found exceptionally helpful in charting a journey back to wellness. She continues to do well, and continues (at her last post) to be tapering.

healthunlocked.com/nras/pos...

[Dobcross1 in reply to helixhelix]

OMG hh, I really wish I had read this at diagnosis rather than finding out the hard way. Then again, I probably would still have gone down the diet route!

[helixhelix in reply to Dobcross1]

I think we each have to find our own way. If these approaches appeal to you then unless you try it will always nag away with the “what if”. But I’m happy I did it parallel as I've never managed to taper off drugs so at least I didn’t waste time faffing about.

[Mall]

I know people who have got themselves into thousands of pounds of debt paying for expensive blood tests and advice from people who have no conscience about charging desperate and vulnerable folk with auto immune problems for consultations , sadly with no improvement in their condition. Be wary about what you willing to pay for.

[Yansouneh]

Thank you everyone.