Don't want to take Lefludomide update - MTHFR gene

So to update everyone. I have been unable to tolerate methotrexate, subcut methotrexate, sulfasalazine or hydroxycholquinine but have very active RA. The next step was going to be lefludomide but I was very reluctant to take it. I had an emergency appointment with the consultant on Tuesday.

They confirmed extensive swelling everywhere. They confirmed lefludomide would be the next option however my blood pressure was a bit high and with my history of gut sensitivity it seems they were also reluctant to try it.

At this point I suggested that perhaps we go with what my American Doctor friend had suggested. They wondered if I might have the MTHFR gene which prevents synthetic folic acid being absorbed. Instead it backs up in the liver and causes other symptoms. I've always felt the synthetic folic acid I was prescribed made me ill.

I suggested I rechallenge the subcut methotrexate but instead of taking the prescribed folic acid I take the methylfolate version and combine this with the natural form of B12 (need both to synthesize it properly). I also suggested I combine all this with BCM-95 curcumin extract (turmeric) as it has been shown in some small scale trials that this form has some protective elements over the liver and kidneys as well a anti inflammatory properties when taken with methotrexate.

To my surprise the consultant thought about it and said why not. What is there to lose. They would also bring it to the attention of the rheumatoid pharmacist. They would be interested in the results.

I made it clear I wasn't a natural remedies obsessive or anything like that and I feel the jury is still out as to whether there is any real substance behind the MTHFR gene theory but it was worth a try. If it didn't work we would have to look at an alternative.

Don't know if anyone else has tried this approach?

5 Replies

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  • Not tried it so don't know, but wouldn't it be wonderful if it works for you? I do hope so. Clemmie

  • No, I've not needed to but I remember someone here did a little while ago, she posted about something else & I think had trouble with it somehow, erroneous levels I think but don't quote me on that! Hopefully she'll see this & reply....I think it was a she! Heck, how unhelpful is that?? Anyway, I do hope it's a solution for you, you need to be getting back onto meds sometime soon really don't you & if this means you can try injecting MTX again & tolerating it by supplementing with methyl folate & B12 plus turmeric then I'd be going for it, you've nothing to lose really have you.

    Good to hear your Rheumy isn't closed to his patients' input too! It does beg the question though, is it more common than thought & more than just a theory being unable to absorb synthetic folic acid, it is after all very commonly prescribed with MTX. Are a good percentage of those that it's thought are unable to tolerate it not actually reacting to MTX but not gaining anything from their folic acid, intended to replenish what MTX nicks off with? Is this why folate is more commonly prescribed in the US than here, apart from it being more expensive than folic acid that is? Mmmm, once I've had a snooze methinks I'll have a bit of a rootle round the internet, I may be back. 😏

  • Does make you wonder. A lot of the research is US based. A lot of the health issues its claimed go along with having the MTHFR gene defect I do have so quite interesting.

    I'm trying it just in case the reason I have more severe side effects from the methotrexate is because I'm not getting any of the benefits of the prescribed folic acid.

    I'm also interested in the studies of methotrexate combined with curcumin. It seems curcumin in RA doesn't reduce inflammation but prevents new but also potentially protects the liver and renal function. Think there have been some trials in rats and one Swedish trial with human patients.

    I'm figuring at the end of the day the only thing it will hurt is my bank balance.

    Rheumatologist very open plus very reluctant to prescribe the lefludomide so happy to go a long I think.

    Interestingly she is also thinking about reducing methotrexate dosage if I still have side effects. She thinks the other dmards are going to make me unwell and better I have something than nothing. Seems my area has had a crack down on biologics and you have to be at deaths door to get one. She says when she started it was very daring to give someone seven.five dose.

    iPad number keyboard suddenly stopped working if you wonder why I was spelling things out lol

  • How great that your rheumy listened to you & took on board your suggestions.

    Mine,is good like that too....altho,he is in his 50's he listens, as do the up & coming younger registrars I see.

    Maybe progress at last?

  • I love that approach! I, too, have the MTHFR gene from both parents. It was a recent finding. Hence, I reacted badly to MTX--lost lots of hair, dried up like a prune and received no benefit from it or the supplemental folic acid (Now I know why!) I will NEVER go back to MTX. I was taking sulfasalazine, but have decided to stop it also, since it apparently does not jive with the mutation either. I am adding much more fruits and veggies to my diet and am considering supplements also. Incidentally, at the time, I was switched from MTX to leflunomide and it did the same thing to me. I am now on Enbrel. It has been more friendly to my defective body!

    All the best!

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