Diet & lifestyle
Hi everyone 🙋🏼♀️
I’m new to the forum and have been reading through the threads already which are all very informative and helpful. I have recently been diagnosed with Psoriatic arthritis and advised to start methotrexate asap! I’m very nervous and anxious about it and just wondered if anyone here is not taking any medication and able to manage their diagnosis with lifestyle changes only? I know diet and lifestyle play a big part even with medication but just really trying to understand if the medication is always a must.
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Hi @Bubbles87
I hope you don’t find this annoying, but I am going to give you an overview of diet and lifestyle changes, that I am convinced have made a difference to the severity and frequency of RA PsA pain and fatigue…..despite the fact I take a biological medicine. I have no evidence to support my claims and they are of course personal to me.
I think it’s completely normal to be anxious about medication. I hadn’t needed to take medication for anything before so I was very apprehensive about. All I’ll say here is that if it doesn’t suit you - please fight your corner to find something that does work for you. It seems there are lots of options, but they seem to always start with methotrexate - not sure why.
I hope this is useful in any case.Gut Health -
I’ve worked hard to improve my overall gut health. This started when I bought a RA cookbook from Amazon and I watched a documentary called Hack Your Health on Netflix. I landed on the fact my diet, although I felt it was a Mediterranean diet, was actually dominated by wheat (toast for breakfast, sandwhich for lunch, pasta for suppper etc). So I stopped all gluten.
I also loved Guinness and Beer, so stopped that too :-(
I then removed synthetic sweeteners , my go to drink was Diet Coke. I loved it. Now it’s sparkling water and I love that more!Then I started to learn about the Micro Biome - gut bacteria - and started taking probiotics and increasing the amount of fibre through veg that I consumed. I swear I feel good when I’ve eaten sauerkraut or drunk a Kefir.
After making these changes I felt brand new.
I went a few steps further and removed the Deadly Nightshade things (so potatoes, tomatoes, aubergines, peppers etc). Looking back, not only was my diet dominated by Wheat, but every meal usually also included potatoes (or pasta), tomatoes and peppers.
I also try my best to avoid sugar or things ending in “ose” glucose etc, as I think this helps too.Essentially I’m trying to really respect my gut.
My latest experiment is all about hydration. I’m using electrolytes in water to see if that helps me feel more hydrated. I think being dehydrated contributes to stiffness.
So it’s been a complete shift in thinking, but I feel really good for it. Although I do dream about a bag of chips and a pint of guiness… occasionally :-)
I was using a sauna on a weekly basis this time last year, but haven’t felt the need to yet. I found the warmth really soothing.I know you wanted to hear from people not taking any medication so I hope this helps in any case. When I started my biologics I was still suffering terrible fatigue. (The only other thing I’ll add, is that distancing myself from a stressful scenario I think helped too).
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Welcome to the online community @Bubbles87 Of course you are understandably anxious about starting treatment for your Psoriatic arthritis (PsA). If it helps an awful lot of people here do take Methotrexate (MTX) successfully.
I see you've already had a detailed reply from Arciere about their own dietary changes. I will just pop in here Versus arthritis' information on the subject of diet:
This might also interested you:
Keeping mobile can really help those of us who have any type of Arthritis.
Best wishes
Ellen.
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@Arciere @Ellen thank you both so much for taking the time to respond I really appreciate the advice and insight. Will definitely be taking it onboard and implementing some of the diet/lifestyle changes and it’s nice to hear some people have taken the methotrexate successfully. I have to be honest and say I am absolutely dreading it but it’s comforting to know I’m not alone in this new journey ☺️
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Hi @Bubbles87 nice to meet you.
I will tell you a bit about me I am vegan follow a vegan diet do the whole 30 plants fruits and nuts etc a week actively look after my gut microbiome fermented veggies too. Very much like Arciere.
But I still take my meds. I am fearful of the damage that can be done to my joints and would want to be well in remission before I stopped mine.
We used to have a regular poster @Arthuritis who also practised very much an anti-inflammatory diet he really studied food and it's implications for conditions such as ours.
The other thing I do is to take regular exercise daily even if it is only a short walk. There are lots of gentle exercises you can do on the main versus arthritis site I think Ellen linked some in. Oh and try (not easy) to look after your own stress levels I think that has an affect on our bodies in more ways that we realise.
Take care
Toni x
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Hi @frogmorton (Toni)
Thank you so much for your reply! I guess I’m hoping for a response that It seems I may not get lol! That I don’t need to take them and I will be grand just looking after my lifestyle. Denial maybe 🙈 it’s all very overwhelming! Appreciate all the advice.
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Of course @Bubbles87 that's what we're all hoping for if it was that easy, but you know you can probably make a huge difference yourself doing everything you can. Of course not overdoing anything too.
It is overwhelming I remember vividly being upset, tearful, angry, fearful the whole range of emotions. I thought I'd let my husband down, embarrass my children and be imobile within 6 months. I was just so negative and a proper arthritis bore. It's a wonder anyone put up with me. Several years later not much of that came true apart from embarrassing the children, but all parents do that nothing to do with arthritis😉
While you're adjusting to this new situation it's good to 'be kind' to yourself too you know. Make sure you rest enough, enjoy your food(!) and do things you like doing. Above all keep talking and getting informed do as much as you can. Here is good so you don't worry your family and friends or bore them like I did.
Take care
Toni x
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@frogmorton Hi Toni, Sadly after nearly 2 years of completely drug free and symptom free remission, I have relapsed.
I learnt a lot along the way about avoiding things that would have caused a flare and loss of remission, (at least for me), and managed to even return to the gym doing weightlifting and so on 3x a week.Things were good, and then I slipped up eating outside my narrow “safe range” on 20Jan. I felt something might have triggered but as it was not familiar and immediate I assumed it would pass, but it didn’t. It just progressed, and now I am on my second week of MTX.
Here are some things along I learnt along the way in my follow up posts:
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- Vagus Nerve Stimulation to treat RA without drugs: Dr Kevin Tracey a neurosurgeon firmly established the neural —> inflammation link via the Vagus nerve. He successfully treated RA patients that did not respond to meds with a surgically implanted VNS device. This stimulates the nerve to signal the spleen to stop inflammation.
2. Despite NICE 2020 guidelines on treating RA fast and hard, and to pursue taking patients to remission, I have yet to come across a rheumy remotely interested in this, it’s almost as if they are all happy with the Pharma funded biologics gravy train. Except for this:
3. Certain Fruits can cause minor flaring, I learnt that certain sugars, I suspect fructose, which is intensely sweet and used in commercial products is the source. Had to avoid pears, morello cherries, papaya, avocados from high end supermarkets (you wouldn’t think so!)
3. Animal Proteins that I consumed & considered healthy precovid, pre-RA ie poultry, ham, fish (ie sushi), and cheese. During my remission I found ALL of these would cause that RA tingle so I would try the tiniest amount to determine what was safe. None of these were. However as I was not a red meat fan, I thought now was a good time to see if it’s because I had during covid become “intolerant” of these, triggering my RA. So I tried cooked beef. No reaction. So for 2 years I could have cooked beef but nothing else.
On 20 Jan I got careless, thinking after 2 years of no MTX, lots of serology and imaging proof at the hospital that i was not RA active, I had a beef tartar starter. The very next day I realised something was wrong. Still hoped it was just a warning not to do it again. Sadly, it wasn’t. It slowly grew to the point where I was rolled back in time to the agony of RA & first experiences.
Now I am trying to figure out how to re-induce remission. It’s a shame hospitals are not interested in this, and ignore NICE 2020. Mainly because the old consultants in charge, like the status quo, and despite the objective (imaging & serology) evidence of people like me, they have shown absolutely zero interest in investigating how I got my lengthy remission or how to replicate it to help others. Worse, I was told there were many others like me, however there was no interest in doing anything to put this together to help patients or reduce the demand for costly biologics.
4. There are no “magic” foods, and things that are apparently “healthy”, for everyone else, may not be healthy for you, and vice versa, eg steak! I don’t yet know if I have developed antibodies to beef, but will test in a few months. - Takeaway - MTX suppresses the immune response to your triggers, it does not stop the misguided recognition of those triggers or stop the alarm bells.You have to learn to recognise those very faint alarm bells before they become an RA ship’s fog horn.
However the fact that I had hospital documented glorious 2 years of drug & RA free remission, should give hope to others. And remind your old set-in-their-ways rheumy of the new NICE 2020 guidelines.
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Lovely to see you again @Arthuritis but not good you are back on your meds. Still 2 years of remission is a pretty good result.
Hopefully all of your experience and research will help @Bubbles87 . Honestly reducing inflammation in our bodies has to be a good thing for everyone for the overall health not just arthritic conditions.
As you know I do my best to follow a wholefood plant based diet doing the 30 a week (usually achieved by wednesday) and have a few triggers of my own. Busy trying to work out what set off my back yesterday myself ATM. Feeling very sorry for myself, but will bounce back as we do.
Take care
Toni x
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It’s good to be in touch again, but as you said, I wish it were under better circumstances.
With regards to your back you probably need MRI imaging to determine the best safest course of action. Yoga/Pilates can help keep joints flexible and prevent bone on bone friction, however without imaging it’s impossible to tell whether you could make it worse or better with stretching & exercise or what type to do.
Hope you feel better soon
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Thanks @Arthuritis I think I caused it myself (had back surgery many years ago) because my shoulder is an issue so I tried sleeping on my back to protect the shoulder! I love yoga and pilates, but the shoulder won't let me atm. Imaging is what I am thinking. You saying the same is probably the push I needed thank you ((()))
Toni x
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