Folic Acid Frequency

[cyprusmum]

Hi, So, query today is whereas the Consultants diagnosing RA on patients have a set check off list (so to speak), why is it that the Folic Acid conundrum as I like to call it, seems so 'off'? Some are advised to take it 3 times a week - others (like myself) once a week on a 5mg dose, so what's the mystery? I get that it has to work after you have taken the MTX to counter balance what MTX does, but why the difference in how much? Even if you are on a high dose of MTX some Consultants are still only suggesting that one pill a week? Any takers?

[Beaches2]

Hi

Well am no expert here, but from what I understand folic acid is taken because mtx can reduce folic acid in the body....and we need it for lots of things. But there is also some thought that folic acid may prevent the mtx working as well as it could.

So, many consultants will start you on a low dose and see how you go. I started with 1 a week......still felt sickly so put it up to 3 a week......and now up to 6 times a week. Some consultants possibly don't think it matters how much we take and think it's more important that we can tolerate mtx so will give it 6 days or whatever to start with. They usually tell us not to take on mtx days in case it does affect mtx working.

Think that's it anyway

[cyprusmum in reply to Beaches2]

My nurse has put forward my concerns to the Consultant and he is giving me some anti sickness pills to take this weekend when I have my MTX. I wonder is that instead of a bit more FA or just to combat the sickness. Learning lots today!

[Beaches2 in reply to cyprusmum]

I don't know. An increase in folic acid certainly helped my sickness but I also got anti sickness tablets too....haven't taken any yet.....feel I'm taking enough "stuff" just now. If you're not getting any side effects on mtx I wouldn't worry about it. Thinking about it definately makes it worse....I can feel a bit sick now just talking or thinking about mtx! Just shows how powerful the brain is hey?

[Hidden]

I think perhaps the folic acid / mtx ratio is just a very inexact science. But on 5mg of mtx I think I'd be happy with one folic acid tablet a week. I started off some years back with a low dose of Mtx and folic acid 6 days a week. I reckon that probably was OTT.

There's usually wriggle room so if, say, you start taking a higher dose of Mtx later on & then find you're getting certain side effects which the folic acid is thought to address - things like mouth ulcers for example - you might want to suggest upping the folic acid unless your rheumy does so first.

[helixhelix]

We each have a different metabolism, so the ability of our kidneys & liver to process the drugs will vary, as do other things like body weight and so on - as well as some people also having other medical issues. So that makes for a lot of the difference in dosage of FA. If your body isn't so good at dealing with the MTX, then maybe you need more FA to help.

I'm back on 5mg a week, and seem to cope with quite solid doses of 3 DMARDs perfectly well - so somehow my body just deals with it. I did ask my consultant about this, and her reply was "good metabolism". So that's also why I now do as much as I can to keep it that way, and eat, exercise and sleep properly. My consultant also said she likes to keep dose of FA as low as possible to get the most out of the methotrexate.

[Karen77]

You hit the nail on the head. I think as much as RA affects each of us differently, each rheumatologist has his or her own approach to treating RA.

My first rheumy suggested my taking FA 3 times per week. My second rheumy said 1x/week, then based on my labs, switched me to 7 days/week and now I'm back to 3 days/week. I think part of it is the delicate dance between doing good and doing harm. As we all know, MTX is a pretty nasty drug with lots of nasty side effects. The FA tempers the MTX side effects, but I think they don't want you to have more FA than necessary so that you don't also nullify the good effects of taking MTX.

[cyprusmum]

Hi, Well, got off the phone to the nurse. Dr has agreed to lower my MTX was 15mg now 10mg, and increase the folic acid to 10mg and has given me Stemetil for sickness. She said that if that doesn't do the trick and I still get side effects, then MTX might not be for me and they will try something else. Definitely trial and error.

Thanks everyone for your answers and tips.

[cyprusmum]

Hi Karen,

I spoke to my nurse, who said that I might not be suitable for the MTX pills. Will discuss more tomorrow. How did you get on with the injections? Did it really bypass all those yucky stomach problems and if so, does it lessen any other effects on your body? Just trying to get some normality injected into my life (excuse the pun).

Also, was wondering about the fish oil and vit D. Pure Omega 3 I presume. Vit D? Can you say if that has helped you.

Thanks.

[nomoreheels]

It does seem to be very much what the Rheumy believes is the optimum dose I've found. When I was first prescribed MTX my Consultant directed I took 5mg the day after I took my tablets & when I reported feeling nauseous he increased it to the day before & the day after & also to take my 15mg as 2 tablets per meal (breakfast, lunch & dinner). My present Rheumy prefers her patients to take it every day except the day they take their MTX, her reason being that more patients tolerate MTX better from the start of treatment when it's difficult enough cope with the diagnosis (or words to that effect, it's over 2 years since we discussed it!).

If you're feeling up to reading a paper on MTX & the supplementation of folic acid/folinic et al this may interest you m.rheumatology.oxfordjourna...

[cyprusmum]

Hi No More Heels,

I did actually ask at the outset about splitting up the dosage, to an resounding no, from my nurse! Ah well, the thing about taking half the FA before the MTX day and the other half after makes sense to me, but heck, who am I to rock the boat. Sometimes a commonsense approach is all that's needed, but I am loath to tell them how to do their job as professionals. I am a newbie and just finding my feet. Thankfully everyone here has been helpful in some tips, so will have to just crack on with it.

Do you do the injections in the same format as say, diabetic needle etc. I had that when pregnant with my daughter, so am not too bothered by doing it. Anything to avoid all the GI problems. It really brings one down and unable to manage the day, when feeling groggy and unwell. I shall read whatever I can get my hands on. My Google button is probably well and truly fed up with me clicking on MTX and RA by now - Thanks.

[nomoreheels in reply to cyprusmum]

I understand, I just wish nurses could go through a couple of weeks feeling like we can do when there's a simple option to avoid it for most, isn't that peevish of me?!

I started injections with prefilled syringes though when my dose was increased to 17.5mg pens were prescribed & now my 20mg are. I think I'm right in saying that the prefilled syringes are no longer being produced in the UK. This link has a demo of how to inject metoject.co.uk/patient/meto...

I prefer injecting in my tum as I was taught though you can also inject in your thigh. I alternate sides each week, again as I was taught.

Do keep to reputable sites when googling, some sites can alarm!

Hope this helps.

[cyprusmum in reply to nomoreheels]

I know, sometimes the good old fashioned 'bedside manner' seems to go out the window. Maybe empathy is not taught anymore, or else by the time they get to being Rheumy Nurse status, they don't feel the need to engage their ears a little bit more.

Insofar as the research, sure, one has to be discerning as to literature one reads.I tend to look at medical papers by Drs but have it in my head now, so 'nearly there'.

Not in the UK, but will see what is available here in Ireland.

Thanks.