mtx n folic acid: why ! is it that , some , i told to... - NRAS

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mtx n folic acid

creekybones profile image
22 Replies

why ! is it that , some , i told to take folic acid , 6 times daily , others just once , and some 3 or 2 . what difference does it make ? can taking to much folic acid , stop the mtx , working has well .. ? if its only use is to prevent side effects , then why all the difference between what people take ? .

many thanks

steve

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creekybones
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22 Replies
beachy profile image
beachy

Hi Steve,

My rheumy told me to take mtx on a Friday and folic acid on a Monday because the folic acid can affect the mtx working. My folic acid tablets are 5mg each, she told me I could increase the dosage to 3 times a week (because I keep getting mouth ulcers etc), as long as I didn't take it on the same day as my mtx.

creekybones profile image
creekybones in reply tobeachy

i take 5mg every day , apart from .mtx day . always ave done . goin to bri.g this up at next app...

thanks

nellysgran profile image
nellysgran in reply tocreekybones

Hi I take 5mg every day except the mtx day, it stops the side affects and if you have tummy trouble it stops that aswell, so I was told by my rheumy.

dtech profile image
dtech

I take folic tabs 10mg once a week. Apparently it stops the side effects of mtx.So I keep takiing them Perhaps i've been lucky in that all the tabs i take none of them give me the bad reactions some other people have. I'm also on naproxin,sulphasalazine & hydoquinine (so at least I wont get malaria lol) taking folic reminds me of that story of the bloke in Surrey who had a machine in his back garden. Asked what it was he said it was to keep elephants out of his garden. When told you don't get elephants in Surrey he said 'See how well it's working then'. :-) All the best, and good luck. Stuart.

earthwitch profile image
earthwitch

It does help with the side effects (including nausea, mouth ulcers, etc), but it also does reduce how effective the MTX is slightly. Thats why you should only take the minimum you need. Some people just need more, which could be for a whole lot of reasons (weight, size, how much they get in their diet anyway, etc). Best idea is to probably start with the smallest once a week dose that the doctor recommends, and then ask to increase it bit by bit if you think you need more. The only real rule about taking it is not to take the folic too close to the time you take the MTX (usually not on the same day).

It is done to your specialist do not take it one mtx as it will prevent it working properly, there have been other questions, blogs and polls on this subject x

I've been researching this today and yesterday because of a problem that arose for me last week (see my blog). I'm now just seeing how I go with one tablet a week as prescribed officially by my GP although my rheum consultant told me via email to try upping to 10mg per week when I was suffering from nausea and somehow or other, having thought my GP who prescribed it, was quite laid back about how much I took - I've tried five per week, and recently down to 3 per week - only starting 2 days after MTX dose. I don't think it makes much difference to me as the five a week didn't stop the sickness back in the summer and now on injectable mtx side effects are less of an issue so I will see how I go on one a week and discuss again with the GP next month. I don't like the idea of it inhibiting the MTX from working though? Tilda

I started out on one 5mg dose of folic acid a week but was having side effects from my mtx. I was getting painful blisters in my nostrils and my hair was coming out in handfulls. I increased to 3 x a week and then eventually to 6 x a week but not on mtx day. The side effects have subsided now and my hair appears to be improving. It was my specialist nurse who agreed for me to up my dose as the GP doesn't get involved in anything to do with rheumatology meds.

Paula x

See this is what I mean about inconclusive? I wonder if any proper clinical studies have been done to determine how much different increasing folic actually makes either to side effects or to the effectiveness of the MTX? It would be very helpful if NHS rheumatology services found out and then all sang from the same hymn book wouldn't it? As I don't have a rheumy nurse I end up using the experiences of other RAers on this site because my GP doesn't even see how taking extra folic supplements would reduce side effects. Tilda x

I agree Tilda, everyone should be singing from the same hymn sheet, then we would all know where we stood regarding folic acid and MTX.

I take my MTX on Saturday and my folic 5mg on Tuesday, never taken more than one tablet a week, luckily not had the side effects like others on here.

Difficult for you not seeing your Consultant much and no Rheummy Nurse to ask, I don't think my GP would interfere with meds that have been prescribed by consultant though.

Maybe anyone having an appointment soon could ask and let us all know the thinking on folic acid, or perhaps someone from NRAS could give us their views.

Mary

shirlthegirl profile image
shirlthegirl

Hiya yes i am only on 5mg a week, but i suppose it is best to start at a low dose, so that it can be increased, But everyone different, how easy it would be if we were all on the same drug.

Hope you get it sorted xx

optomistic profile image
optomistic

I take 5mg of mtx on a Friday. On Sunday I take 5mg of folic acid.Does it mean the lower the dose of mtx the less folic acid you take? Thankfully I've no side effects (That I know of)x

alicn profile image
alicn

Hi everyone. My understanding of the folic acid issue is that it all depends on the individuals response to methotrexate. Although we only take small doses compared to standard chemotherapy doses everyone will lose folate from their body due to the action of the methotrexate. Folate is needed in the production of fast developing cells in our bodies-the mouth, gut lining, hair follicles etc. When our bodies suffer a loss of folate we get symptoms such as mouth ulcers, nausea, irritable bowel, hair loss etc..we will all react slightly differently to the mtx and therefore need varying doses of folic acid supplement. I haven't seen any data to suggest it reduces the efficacy of the mtx, it prob is sensible though to take what your own body seems to need to minimise your symptoms. Hope this helps explain the variances a bit from person to person x

Hi, I take folic acid 6 days a week (5 mg per day) and not on the day I do MTX injection. Originally I was taking 5mg per week on the day before I took the pills. Prior to this I started to feel sick all the time (on 8 mtx pills weekly) but with this new regime I only feel slightly rubbish on the day after I inject added to which I know I am getting a bigger hit of the drug as it bypasses the stomach. When I was pregnant (26 years ago!) my oncologist put me straight onto folic acid as apparently it lessens the chance of having a child with spina bifida. If you are having problems, I would suggest you ask if it is worth increasing to 6 days a week x 5mg. It will either work or it won't but I would be surprised if it gave you problems. Mind you, I am not a medic and would hate to be quoted as interfering with your treatment. I still find it hard to believe that a 'mild' drug like folic acid could be affected by MTX and you can buy it over the counter (or is it the over way around!) but there you go! Good luck - these damn drugs are an absolute minefield and I am so pleased that I would never be in the position of actually prescribing the things! XXXVirge

watson3 profile image
watson3

Hi everyone.

I take 5mgs for 6days a week. Omit it on the day of methoject.

I have forgotten to take the same dose one week and suffered from sores on my lips.

Now I take it regularly and no problems with mouth/lips ulcers.

I agree there should be some continuity in drug doses, but be guided by personal symptoms and specialist advice. X

Sue8 profile image
Sue8

I was only on one 5mg per week on a Friday and I take the MTX Mondays. My hair was going thin coming out in handfuls so my rheumy nurse has upped my dose to 3 times a week and to 6 if no improvement. but not on the same day as the MTX. Am I right in thinking that the MTX stops your body producing the folic acis hence the supp?

I take 5mg folic acid every day including the day I inject mtx. I have been doing this on the advice of my Remy cons since starting mtx, but I inject in the morning and take folic acid at night. I queried it with hospital pharmacist initially due to queries on here and in my mtx blood result monitoring book. They said all consultants differ in their usage and therefore take or don't take on day of mtx.

If I forget to take then I do very quickly get mouth ulcers and nausea though.

Very confusing isn't it.

TishG profile image
TishG

I take 5mg Folic acid only once a week two days after MTX. Luckily for me, this seems to work!

jonsi profile image
jonsi in reply toTishG

thats what i have just started, hope it works for me aswell. xxxx

creekybones profile image
creekybones

yes tilda i see inconclusive . some take 1 x 5mg a week , some 3 x 5mg , some 6 x 5mg .. even some say it doesnt reduce the MTX working as well , and some say it does .

we all no it cuts down thre side effects , thats isnt any good if it also stops the MTX working . otherwise what is the point in taking the stuff ..

i am going to ask my rheumy at the next app . i will go bad if he fobs me off with the old favourite ,, everyone is different . no we are not different , we are the same . did the last person walk in with two heads or something or is the next person due to see you , got 5 legs . we are all the same i get fed up with being told . we are all different .

Hi all

We are aware that there are huge discrepancies in the way that folic acid is prescribed, and unfortunately there are no set guidelines on this. Methotrexate (MTX) depletes the body of folic acid and so this needs to be replaced, but how much is prescribed really can vary widely. The one area of agreement seems to be that folic acid should not be taken on the same day as the MTX as folic acid may reduce the efficacy of MTX. We would always suggest you follow the advice of your own consultant.

Last year we ran a poll looking into this and got a lot of responses from HU users. Please follow the link below if you'd like to take a look at the results: nras.healthunlocked.com/pol...

Kind regard

Sarah Kate

NRAS

jonsi profile image
jonsi

im just starting on my mtx and folic acid pills, just now im only on one folic a week, hope it stays like thats. hope you get the answers you are after steve. stay warm. xx

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