Folic Acid: I have been prescribed 5mg a day, for six... - NRAS

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Folic Acid

GinnyE profile image
39 Replies

I have been prescribed 5mg a day, for six days a week, of folic acid to help with nausea from methotrexate. I recently asked to go back to taking the methotrexate by tablet as I have become almost phobic about the injection.

I am not sure why, but I’ve become suspicious about taking the folic acid. On line is does say it causes nausea and over 1mg a day is queried as too high. But my Rheumatologist has prescribed it for years.

Anyway, I’ve cut it down to one or two tablets a week. Do you think this is a safe and reasonable experiment?

I’ve been given a med to help with the nausea but I’d prefer to find a solution that cuts down on the meds I take, rather than adding to them.

NB. Nausea seems to have improved this week.. or is this all mind games I’m playing with myself?.

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GinnyE
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39 Replies
Amnesiac3637 profile image
Amnesiac3637

In answer to your safe and reasonable experiment question I have to ask why you would go online and read some algorithm about folic acid rather than take your incredibly experienced consultant’s advice with regard to your folic acid dose.

Obviously, it's entirely up to you whether you follow advice from your medics and what you decide to take but the wealth of experience of the rheumatology teams who prescribe these drugs day in, day out has got to trump ‘Dr Google’ and its often misleading and sometimes downright inaccurate information. Folic acid at 5mgs daily will help with your nausea from the MTX but you must give it a chance to work.

Your nausea may have decreased recently and that’s great as there’s nothing much worse than feeling sick all the time and what you’ve done may have improved it - we’re all different -but there’s no better advice than that which you get from qualified medics so I know who I’d listen to! All the best and hope you get everything under control however you go about it.

Bionic1 profile image
Bionic1 in reply toAmnesiac3637

It seems al Rheumatologists advice is different. I take Methotrexate but take 5mg folic Acid 4 days a week never have taken it every day. Get in touch with your Rheumy for advice or a nurse.Fingers crossed for you. Xx

GinnyE profile image
GinnyE in reply toBionic1

It does seem variable.

GinnyE profile image
GinnyE in reply toAmnesiac3637

Thanks for your reply. The information I've seen on line is via NHS. I know there is a great variance on how often people take folic acid. It was my nurse who put me on a higher dose many years ago. I know the leaflet it comes with says the most common side effect is nausea. I wondered if other people have ever felt it makes them nauseous.

Bootoo profile image
Bootoo

Folic acid is just a vitamin, if your rheumy nurse has said take it 6 days a week I would follow their advice.

Madmusiclover profile image
Madmusiclover

folic acid makes me feel awful. I thought it was the metho….but I’m not so sure. Anyway starting dose is 1 tab a week. I was on that and then they increased it to 6, but that made me feel even worse. Ask your rheumy if you could cut down.

GinnyE profile image
GinnyE in reply toMadmusiclover

Seems like evidence for suspecting folic acid.

PSAWarrior28 profile image
PSAWarrior28 in reply toMadmusiclover

If you have the mthfr-gene , it's likely that folic acid will make you feel very ill. The reason is anyone with this gene will not be able to process the synthetic form of folic acid. The natural form of folic acid is folinic acid or methylfolate.

GinnyE profile image
GinnyE in reply toPSAWarrior28

Not heard of this. I don’t think it’s the case for me, looking at symptoms, and I don’t feel very ill when I take the folic tabs, just nauseous.

Madmusiclover profile image
Madmusiclover

messaged you.

PSAWarrior28 profile image
PSAWarrior28

Not everyone can metabolize folic acid. If you have mthfr-gene, then it's quite possible that you will not be able to metabolize the synthetic form of folic acid. The natural form of folic acid is methylfolate or folinic acid.

Honeybee61 profile image
Honeybee61

I was prescribed one 5mg folic acid tablet to be taken three days after methotrexate. That was 25 years ago, I'm still on the same dose.

Rusticgarden profile image
Rusticgarden

I feel you should follow your Rheumatology Consultant who has training and knowledge and not follow online talk .Folic acid replaces what methotrexate takes away .

wilbertjellyfish profile image
wilbertjellyfish

I'm lucky in that I don't suffer nausea so I only take one 5mg folic acid two days after the injection. I agree with others though trust your health care professionals they have your best interests at heart, Google doesn't. Yes speak to them about your concerns but they really do want to help you.

Chester1975 profile image
Chester1975

Hi Ginny

Quick Q. Is it a needle phobia at all? As I asked my GP to prescribe a numbing cream which I apply to my tummy or leg an hour before injecting myself and I can’t feel anything. It’s been great. I do know that the injections are better absorbed and you have less gastro and tummy issues compared to the tablet form. Xx

GinnyE profile image
GinnyE in reply toChester1975

It’s not painful when I inject. I just loath the sight of the pens. I know it sounds a bit pathetic.

Thingybob profile image
Thingybob in reply toGinnyE

I am totally with you on this, you are not alone, I get it. Its not pathetic its a thing. The new style ones are a bit better . Also i get the nausea so i think subconciously my mind n body links the two ( pavlov lol ) so doubles the feeling . I think about the jab for the whole day beforehand ...crazy. . All the best 🙂

GinnyE profile image
GinnyE in reply toThingybob

Yes, I think this is it. I stopped using the medical wipe as the smell added to it. I know if going back to the tablets proves to be a bad idea I may have to revert to the pens again. I'm splitting the dose at the moment. Thanks for your reply. Nice to know I'm not alone!

Thingybob profile image
Thingybob in reply toGinnyE

Let us know how you get on . I hadnt thought of trying the tablets again but its a logical idea. Same here with the wipes... x

Gilliancheche profile image
Gilliancheche

I think you should discuss with your consultant, but I started on 1 tablet a week but nausea was awful so gradually increased to 6 a week.

Cat-E profile image
Cat-E

I started on 1 tablet folic acid a week, but increased to 6x due to tummy troubles. However then I became constipated so I reduced it to 3x a week. I told my nurse at my next appointment that I'd done this and she said that's fine, whatever works for you, as long as you don't take it on mtx day. I now take it 2 or 3x a week, whenever I remember basically!

GinnyE profile image
GinnyE in reply toCat-E

Thanks. I think I may follow this route.

ABwn profile image
ABwn

I have been on I tablet for 6 days a week but told not to take it the same day as mtx. Started shortly after being put on mtx. This was because my hair started falling out quite badly. We're all different. I've been on them since 2008. Good luck.

Sebastian247 profile image
Sebastian247

I increased folic acid from one to six a when I was on mtx to help with nausea. It worked for me. I see no problem with what you suggest. It's your body and you know better than anyone how you feel.

Memaw21 profile image
Memaw21

Hi, I thought mt stomach problems were all due to MTX but I felt worse on days I took folic acid. I have now cut back the folic acid from 6 to 2 per week and feel better. Rheumy said this was fine.

GinnyE profile image
GinnyE

Thanks for reply. I'm going to cut back too.

Gramma3 profile image
Gramma3

I was advised to increase my folate acid to daily 5mg except methotrexate day. It has improved symptoms significantly. Trust your rheumatologist. Easy to say, but I am now starting too and its a weight off my mind. So much rubbish on this site even and goole in general.

Mall profile image
Mall

folic acid 6 days a week can help by stopping or preventing some of the unwanted side effects caused by taking methotrexate. These include nausea, hair thinning, mouth ulcers. When my dose was increased from 1 tablet to 6 tablets a week I asked my rheumatologist why as I hadn’t complained about side effects and was happy to stay on one a week , he told me that he could see from my blood tests that I needed a higher dose. Why don’t you ask your rheumatologist who has knowledge of your blood tests.

TassieTiger profile image
TassieTiger

Reading the replies, I have to endorse advice about trusting your rheum team. My MTX has been increased to 6 a day since coming to UK from France. I’ve never had nausea. No one has mentioned omeprazole for nausea I think nor taking something like Barocca on the MTX day. It has folic acid in it. Good luck in finding your happy place.

HappykindaGal profile image
HappykindaGal

I ditched the folic acid for Methylfolate which is a more natural product on the advice of a private doc (my client) who's also a consultant rheumatologist in the NHS. Obviously though it's not on prescription so it's a paid for. He said it's easier for the body to absorb.

Lex54 profile image
Lex54

I think you should take it as prescribed. I've been taking folic acid daily apart from Methotrexate days at same dose since starting Methotrexate. Never had a problem with Methotrexate over 8 years! It helps reduce or illuminate side effects. Never felt sick on it in tablet form. It also helps with immune system.

Otto11 profile image
Otto11

Hi when I was on Methotrexate I was advised to take Folic Acid every day but not the day of your Methotrexate. I think all consultants have a slightly different approach or some say 3 days a week some say 6. I would go with the advice you have been given but let them know if things dont improve.

RAlife2018 profile image
RAlife2018

Good morning, actually, very bizarre to hear you are taking folate for nausea. Hmmmm; while everyone is different, methotrexate didn't cause me any nausea. What I did find after few weeks of taking it was complete brain fog to the point I thought I was developing early alzheimer's. Turns out, after reviewing more than 10 clinical peer reviewed research articles, methotrexate wipes out your folate and when folate is wiped out it impairs your cognition, memory and recall. I could not remember what a "keyboard" was called and was saying "the thing you type on"---when I brought these articles to my doctor's nurse's attention, she was like "oh yeah, I thought you knew"--I was so upset. I was 34yo newly dx with RA and literally could not walk (my maternal gma had RA and was fully disabled by her late 30s)--how on earth would I have known about the folate. Nonetheless, I began taking 7.5mg every sunday independently as the nurse/doctor never said much else. Took about 6 weeks to recover extremely slowly; much relieved it was probably not early alzheimer's or MS after all. What a nightmare for sure. What I did notice in research is most take folate once a week, not daily, but perhaps your daily dose is low enough. This is a good article from NIH that covers daily folic acid vs folate acid intakes for a "normal" person--so not us on these special meds, etc. Hope it helps: ods.od.nih.gov/factsheets/F...

AgedCrone profile image
AgedCrone

In a word yes..you are over thinking & second guessing your doctor’s professional advice. It took that doctor many years to become a Consultant Rheumatologist…so you would be wise to listen - chopping & changing how many tablets you take just confuses things .

5mg x 6 days a week is a very usual prescribed dose in the UK.

By prescribing that your rheumatologist does know what s/he is doing. You can only get the 5mg FA tablets on prescription. So why not give it a try for a bit longer?

A lot of people who contribute to this site take that dose for many years,& I don’t think we have lost anybody yet.

So stop questioning…& take your meds as prescribed. ..by your highly qualified doctor.

Hope you feel better soon,

mchokozi profile image
mchokozi

Methotrexate tends to deplete the body's stores of Folate, so it is considered standard practice to prescribe concurrent Folic Acid administration with a typical dose of 1 mg (1000 mcg) taken daily by mouth. (Speaking as a nurse and a patient myself having taken both since 2007.)

AgedCrone profile image
AgedCrone in reply tomchokozi

But you are in the US aren’t you?

In the UK the usual dose is one 5mg tablet every day except the day you take the Methotrexate.

But bottom line the best thing to do is to take what your rheumatologist prescribes.

mchokozi profile image
mchokozi in reply toAgedCrone

You are correct that I am in the U.S., and you can note some practice-based variance across countries, but the key is taking the Folic Acid supplement as prescribed by your Rheumatologist consistent with your national prescribing guidelines.

HappyD34 profile image
HappyD34

Hello there. I’ve been on 5mg folic acid for 6 days a week for 3 weeks. I’ve found it ok, maybe a tad of constipation but I’m not too sure whether that’s the metho injections or not. I spoke with my rheumy nurse yesterday and she said it was quite uncommon to have folic acid side effects and said that if i wanted to I could reduce but stay on at least 3 x per week. That said she did say it’s all dependent on which county you live in. Not sure how long you’ve taken the folic for ? But have a chat with your rheumy team. Best wishes

Pasjc profile image
Pasjc in reply toHappyD34

hi. I've had the same as you 5mg 6 days a week I'm now constipated I will mention it at my next appointment. interesting though after reading all of the above my prescription is actually 5mg 7 days a week. I felt this was wrong so only take it for 6 days and miss methotrexate day.

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