Methylfolate, MTHFR and arthritis.

[fbirder]

For over 35 years I’ve been suffering from osteoarthritis. Over the years it had been getting steadily worse. But soon after my diagnosis with PA it improved. I’d assumed it had been caused by my B12 deficiency, even though it’s not a common (or even unusual symptom).

Then, in November, it started coming back. Thumb, wrists, knees - all took their turns at swelling up and screaming in pain. For a couple of weeks I needed crutches to get about. My GP ruled out gout and rheumatoid arthritis, said the x-ray agreed with osteoarthritis and we sorted out a regimen of painkillers.

Throughout November, December and January I would have repeated flare-ups. Things were getting depressing.

But, after one bout at the beginning of February I was free from attacks. The same in March. And April. And, so far, in May. Why?

Then I realised that the three month period of pain coincided with the three months where I’d tried replacing the methylfolate I’d been taking since July 2015 with folic acid. After that trial period I went back to methylfolate.

I have the C677T mutation (homozygous) on the MTHFR gene. Some people with that mutation feel better if they take methylfolate, which is why I’d initially used it. But the switch to folic acid was to see if it made any noticeable difference - and it didn’t, until the arthritis came back.

I found a couple of papers. This one says they found a highly significant correlation between homozygous C677T and osteoarthritis. They also found a correlation with a mutation in the ACE gene - which I also carry. ncbi.nlm.nih.gov/pubmed/230... They didn’t look into using methylfolate to rectify the arthritis.

Now this is purely anecdotal. But there is some science to back it up. I would suggest that those with OA might give the methylfolate a trial run - 400 mcg a day should do. It can’t do any harm.

[Gambit62 Administrator]

may be I'll think about giving methylfolate a go - experiencing more stiffness and occasional feeling of collapse in the ankles - seems better if I get my b12 levels up though but...

guess I really ought to get a gene test done as well.

[Foggyme Administrator in reply to Gambit62]

Gambit. Just in case you don't know, 23andme no longer include MTHFR etc. in their gene testing suite.

There must be other providers who do it but I'm not sure who. Apologies, no time to look right now.

I have collapsing ankles too, which resulted in a 'walking on glass' feeling across the balls of my feet and the development of a Morton’s neuroma (very painful). Podiatrist made some orthotic insoles to re-address positioning and these have helped tremendously with both the pain and the Morton's neuroma, to the extend that I was able to avoid a surgery that often has poor outcomes. And as a bonus, I can now go walking again 😀.

Hope you find a solution that works for you.

[Foggyme Administrator]

Thanks for posting this fbirder and I'm so sorry that you've been having such a rough time recently. I had been thinking of you and wondering because you hadn't been around the forum as much as usual.

So, very pleased that you've hit on a solution that sounds as if it's going to work for you.

I've previously tried methylfolate for a short time and had thought it didn't suit me. But on reflection, there was so much going on at the time that it might have been difficult to tell.

My joints are suffering a flare again, despite being on immunosuppressants, so I'm going to give methylfolate a whirl and see if it makes a difference for me.

And it's interesting to factor your comments into the methylfolate / folic acid debate 😉.

Thanks again and hope you begin to feel better PDQ.

👍

[deniseinmilden]

Thank you for your post - very interesting and relevant to me. Although a chromosome test was done about 15 years ago in a fertility clinic I had forgotten until now and don't have the results, but...

I don't survive - my hydroxocobalamin won't work - without methylfolate.

Last year Solgar stopped doing methylfolate 800ug and changed it for methylfolate 1000ug for which they charged nearly twice the price. I struggle to be well enough to work enough hours self employed to stay solvent so costs are very important to me.

I liked the Solgar methylfolate and used to suck them slowly! When, in September, I bought other brands, I swallowed them and despite taking more total mcgs I gradually declined. I just thought they were inferior! My joints gradually got worse until over the winter my knees especially were crippling me. I put it down to being dx with osteo about 5 years ago when they said I'd need new knees in about 5 years time! (I hope not because I can't afford to not work and my heart is too duff for a general!!😁).

In January I happened to find a bottle of a few old Solgar 800ugs and was suddenly well for 8 days (Wahoo!).

I had continued to decline and with the pain in my joints it was getting to the point of not being worth it until I suddenly realised the above, bought Solgar 1000ugs and put them under my tongue.

Wow! In a few days I felt so much better and my joints have improved again radically.

This too is all anecdotal but some papers are written studies of reported results. It does corroborate your findings.

Please... does anyone know why I don't seem to absorb methylfolate through my digestive tract? Is it just because my physical absobtion is lousy (I don't seem to absorb minerals properly either) or is there a more scientific reason?

I'm glad your joints have improved Frank.

Best wishes, Denise

[Frodo]

Sorry to hear you've been going through this pain.

As an aside, your research does make a nonsense of the kinds of things some of us are told by doctors about our symptoms, that they are down to 'stress' or 'wear and tear'. I suspect many things are down to genetics.

For myself, I have a problem with folic acid and methylfolate - they appear to trigger and worsen my terrible migraines. I've found a chewable multi vit which seems to be ok so I suppose I'm getting some from that and from food but I can't take the larger amounts often recommended to be taken with B12.

[fbirder in reply to Frodo]

I don’t take the extreme amounts some people recommend. I take 400 mcg every other day. I do eat plenty of green veg though.

I've always thought the docs were talking balderdash about my arthritis in my mid-20s. Their favourite reason was that it was because of my weight. I never got a good reply to my question ‘That might explain the problems with my knees, but what about my wrists?’z

[deniseinmilden in reply to Frodo]

I met a lady the other day who can't tolerate any folate, even small amounts from her diet, so it shows how different we all are!

[fbirder in reply to deniseinmilden]

So she only eats meat?

[deniseinmilden]

And a special plain rice and sugar and a few similar things. And we think we suffer!

Thankfully the NHS hospital that she is under recognises her plight and helps her but doesn't have B12 specialists.

[fbirder]

5 months later....

In July I had another set of blood tests and my folate was right at the bottom of the range. So I’ve upped my dose of methylfolate to 400 mcg a day.

I did have a bout of big toe joint pain in July, but the doc and I agreed it was gout (symptoms were totally unlike my previous experiences). He suggested I’d got severely dehydrated in the very hot weather. An extra litre of water each day plus a week of steroids cleared it up completely.

As for the osteoarthritis - not a twinge. I’m on the methylfolate for good.

[QUE6T-33 in reply to fbirder]

Hi what brand of methylfolate do you use please ?

[fbirder in reply to QUE6T-33]

If currently use this one - amazon.co.uk/gp/product/B01... because it is, per tablet, the cheapest. It is more than the recommended dose, being 400 mcg but I’m not that worried as I’m a fair bit more massive than the average patient.

[fbirder]

Update.

Well, it’s now been 11 months since I switched back from folic acid to methylfolate. And I’m still free of arthritis.

If I were a real scientist I would stop taking the methylfolate again for a few months. But that ain’t gonna happen. I’m enjoying life without terrible pain. It’s not pain-free, but that’s because of the joint damage already there (as shown on the X-rays). But the recurring inflammation seems to have gone away.