From Methotrexate to Natural Management

nadiat

Hi everyone

I'm an RA patient in my late 30s, diagnosed over 4 years ago. It came out of nowhere as a permanent flare up in practically every joint from toe to jaw. Methotrexate worked for me but not without major side effects. After a long hard slog I'm now at a point (after multiple tiny dosage reductions) where I'm trying life off the meds. I'm over 2 months in and whilst it's not going perfectly, it's manageable. Time will tell if it deteriorates!

Nice to meet you all, and I look forward to learning from you.

Nadia

Tom

Welcome to the forum, @nadiat. I see that you are in your late thirties, with a 4-year history of diagnosed RA. It effected every joint and although Methotrexate worked, it was only at the cost of side effects that led to gradual dosage reduction and now a tolerable life completely off medication for the last two months.

 I hope that the attached may be of assistance in your journey. Your experience will certainly give hope to others on the forum and I hope you will post regularly to let us know how you are getting on.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Best of luck. 

Tom, Moderator.

stickywicket

We can manage pain without DMARDS but we can't manage disease progression. Remission is fairly common in the early years but it really isn't a good idea to aim for 'natural management'. There's nothing natural about an autoimmune disease. We have faulty, overactive immune systems which attack our own bodies. I'd advise you to reconsider and talk to your rheumatologist or, at least, your GP.

nadiat

Hi both - Tom, thanks for the link and stickywicket for the advice. To be clear this is all being done with the active involvement and consultation of my rheumatologist.

stickywicket

That's interesting. And I'm sure others will be interested too. How are you going about it? Please keep us updated.

Just in case - there are plenty of other DMARDS besides meth.

nadiat

In it's most basic terms the consultants agreed I could trial a 2.5mg dose reduction every 6 months. If I lasted with no flares for 8 weeks after each reduction then it was assumed safe to continue at that dose. I made it down to 2.5mg at the beginning of this year, barely a flare in sight. So in June I, with their approval, stopped taking the MTX. There's a very real chance I will go back on it at a low dose (5mg) soon, as it hasn't been smooth sailing at all.

In the background I've overhauled my lifestyle pretty much from Day 1 of diagnosis. An elimination diet at the outset with a very slow reintroduction of foods to understand how they affect me. Carefully planned meals involving lots of greens and Greek yoghurt, avoiding gluten and sugar (in moderation!!). Lots of exercise - Crossfit has been an absolute saving grace. At the start even trying to hang off a bar made me cry out in pain, now I'm nearly doing pull ups. Balancing fatigue has been a challenge but, mostly manageable save for the odd huge blip. And managing stress has been huge. There is no doubt stress sets my flares off massively. So I've learned ways to mitigate that and try and keep myself happy and calm. Easier said than done sometimes 😂

I'm very mindful of disease progression and I won't stubbornly stay off the MTX just because I want to. But if I can get to a point where its all under control, as it has been for 4 years, under natural management then I'll take it. In full acknowledgment that I'll probably end up on some drug or another down the line, but I feel I have to at least try! And if I don't succeed this time I'll try again in a year 😊

stickywicket

Thanks for that detailed explanation. I appreciate it and I hope others will too. You have made sensible and considered lifestyle changes and I do think that sort of approach would help anyone. Taking ownership and control of our disease is a huge part.

I'm not at all convinced that RA - DMARDS is desirable, though😄 and I'm pleased you're keeping your options open.

My life was very different. I was diagnosed at 15 when the only options were NSAIDS (wrecked my stomach) and the occasional burst of steroids. But, like many people in the early stages, I had - often long - bouts of remission. I did nothing to 'earn' these: they just happened. Methotrexate was great for me. By the time I came to it there were no remissions, two TKRs and lots of deformities and pain. At most, I was on 22.5mgs meth plus one hydroxychloroquine. Always keen to reduce meds where possible, I got it down, very, very gradually, to 10mgs meth (plus hydroxy). When I tried to take it to 7.5 though, my rheumatologist told me my bloods showed that my inflammatory levels had been very high for 6 months and suggested I went back to 10mgs. I've been on that ever since.

Oddly, I felt fine on the lower dose. Maybe one just gets used to the 'moderately grotty' as @dreamdaisy puts it. I do know that, as one ages (I'm 76) the immune levels get lower so maybe that helped. However, I now see myself as being on this permanently. It's not onerous though I understand those who want to avoid it.

I wish you well but keep checking those inflammatory levels. RA doesn't just attack joints if neglected.

And thanks.