Folic Acid: Hello again, how much Folic Acid are... - NRAS

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Folic Acid

regina79
regina79
72 Replies

Hello again,

how much Folic Acid are people taking in a week?! I used to take 5 mg the day after Methotrexate. But the new NHS Rhematologist told me to take it every day apart from Friday and Saturday. So 5 mg for 5 days?! But I've been super nauseous since Sunday. Is taking more than 10 mg of Folic Acid bad? I wonder if he made a mistake... x

72 Replies
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JFlay

Hi Regina,

I used to take it 5 days a week when I was on MTX because I had nausea. It stopped the nausea but I still had bad gut pains.

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regina79
regina79
in reply to JFlay

I see.. sorry to hear about the tummy issues. :(

Well, this week I've taken 25 mg of Folic Acid in total. :o not sure is right.. xx

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JFlay
JFlay
in reply to regina79

I think it's quite normal when on MTX as MTX can deplete the folate levels in your body. That may be showing up in your blood tests if it's been checked? or maybe it's precautionary if your MTX dose is being increased?

Expect you will get some more detailed comments 👍

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regina79
regina79
in reply to JFlay

Glad to hear that! Thank you xx

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AgedCrone

No your rheumatologist has not made a mistake.

One x 5mg FA tablet every day except Mtx day is a very normal dose in the UK.

Don’t take it the day you take the Mtx

I took that dose for 7 years & it settled any nausea I might have otherwise

experienced.

I took the Mtx after dinner & the FA the next morning. The only strange side effect I had was a metallic taste in my mouth.....but strong peppermints sorted that for me.

Good Luck...hope it settles your nausea.

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regina79
regina79
in reply to AgedCrone

Oh good! thanks for letting me know. I think that I should also keep taking it the day after Methotrexate because I got a huge migraine plus nausea.. and I used to take it the day after and I felt better. But this Rheumatologist told me to take it only Sunday to Thursday. I take Methotrexate on Friday eve xx

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AgedCrone
AgedCrone
in reply to regina79

Check with your rheumy nurse but I thinks it’s pretty normal to take it six days a week.

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regina79
regina79
in reply to AgedCrone

Just worried about the quality every day. I have no number for the specialist nurse. I think the app. Is in November...

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AgedCrone
AgedCrone
in reply to regina79

What do you men “the quality”?

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regina79
regina79
in reply to AgedCrone

Sorry I meant to type 'quantity'!

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AgedCrone
AgedCrone
in reply to regina79

I just wondered!

Hope you get to speak to one of your rheumy team soo l

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regina79
regina79
in reply to AgedCrone

Thank you :) xx

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poemsgalore1

I have always taken 5mg Folic Acid on every day except for MTX day. It's a known fact that Rheumatologists in UK have various ideas about this. In the US all patients taking MTX take FA EVERY day.

sps.nhs.uk/articles/what-is...

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regina79

Fair enough! Well I'm definitely relieved hearing that so many are taking a 5 mg dose every day! Just read an article stating that we should take a maximum dose of 20 mg in a week :O x

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chmod777

I’m in the US and take 1mg every day

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BonnieG123

Yes, but I think our dose is lower.

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amatrx
amatrx
in reply to poemsgalore1

I was Confused at the earlier comments of taking the folic acid the day after the methotrexate. I was told to take it everyday. By doing this I have had no nausea or diarrhea, only joint and muscle pain, fatigue,dizziness, swollen hands and ankles. My previous med, I had severe nausea, diarrhea, off balance, my white blood count was low and fatigue, no quality of life. I heard how this med causes severe side effects, but so far it doesn't touch what I went through before. I started this med Friday and will not have my blood work done until the 29th. Anxious to see about my white blood count.

I am wondering will I have the joint pain each time I take the methotrexate or will it get better with time?

Aatrxla

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helixhelix

And in the US people take it 7 days a week. Really don’t fret as any folic acid your body doesn’t need it will excrete.

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regina79
regina79
in reply to helixhelix

thanks x

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nomoreheels

I've just replied to your other post re specialist nurses. The folic acid dose is probably right, Rheumys vary on their thoughts about replacing the folate lost by taking MTX. You see when taking large doses of folic acid daily (5mg is a comparatively high dose) it's prescribed off license, meaning there's no recommended guideline for this use of it.

You're taking 25mg/week, I take 30mg/week... every day except MTX day, my Rheumy's preference & not an unusual dose. When I first started MTX I only took it the day after, it was increased to the day before as well when I had thinning hair but this was a different Rheumy.

Oddly enough we had someone ask the other day if higher doses of folic acid could be giving her headaches, she takes 45mg/week. It is a side effect but not a serious one as we can't overdose on it, we naturally pee out any we don't need.

Anyway, I'd ask if you feel you should double check you've been given the correct dosage/days to take it.

Something poemsgalore1 (above) omitted to add re patients in the US, they're only prescribed 1mg usually.

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regina79

I'm just not sure. I think I had side-effects from Methotrexate on Saturday morning. Which I normally didn't get if I was taking Folic Acid in the morning, the day after Methotrexate. I will just ask if I can take one of the pills the day after instead of another day x

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nomoreheels

We're reply-crossing! I've just replied on your other post. I agree, it's likely to be an MTX headache.

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KittyJ

Doesn’t seem like a mistake, I and many others take it every day except mtx day so 30mg. Gradually increased to this amount due to severe nausea.

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regina79
regina79
in reply to KittyJ

Cool thank you xx

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Creakyjoints

I was started on 5mg of Folic Acid once a week, which was increased to 3 times a week and then to 6 times a week, but due to problems with severe nausea, loss of appetite and weight loss. After doing a bit of research and finding that they contain lactose (I'm lactose intolerant) I spoke with my Rheumy Nurse and for the next two weeks we are going to try MTX without the Folic Acid. If this improves my symptoms then they have agreed that I can try the Folic Acid Oral Solution which does not have lactose. It'll be interesting to see if this has been the problem.

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BonnieG123

I’m lactose intolerant as well but I don’t seem to have any problem with it in that regard. I’m only 1MG a day, everyday. I’ve been off MTX for now but my rheumy told me to keep taking my folic acid and Biotin. I was told it helps keep from losing hair and it did seem to stop that while I was taking MTX.

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Creakyjoints

Since I've stopped taking the Folic Acid things do seem to have settled down, so it does look as though that's been the problem for me, but good news as today it's been confirmed that I can have the Oral Folic Acid Solution instead.

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BonnieG123

Glad you have this option. Hope it works well for you.

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Mmrr

5 mgs a day, every day except MTX day. So 5mgs, 6 days a week.

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Esmereld

Try ginger beer. Might stop the nausea and it tastes pretty good too.

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regina79
regina79
in reply to Esmereld

Oh I can’t drink that as it’s fizzy.. is it fizzy? I get very bloated and I feel awful afterwards xx

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Esmereld
Esmereld
in reply to regina79

Yes it’s fizzy. Ginger is good if you can incorporate it into your diet. It might help.

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Esmereld
Esmereld
in reply to regina79

Hi. I just came across this post again. I don’t know why I didn’t think of this at the time. Why don’t you try buying a bottle of Ginger beer when you go to the supermarket next and loosen the lid. You will find the big bottles with the Coke and lemonade et cetera . Leave it to go flat. I don’t know if it would make any difference to the flavour. It might be awful but it’s not expensive. You have nothing to lose by trying.

I am reiterating this to you because I saw the benefits to my mother when she was at stage four lung cancer. It wasn’t a pretty sight. She was suffering terribly with nausea. Retching for no reason. It was heartbreaking to see. This is very simple drink soothed her no end. The only thing is I can’t remember how much we gave her. I do know we had a giggle about it.

You might not need it any more but someone else might see this and be helped.

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Bookworm55

Yes I too take 5mg folic acid 6 days a week- not mtx day.

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Didimo

Hi Regina, I take it everyday except MTX day, which I’m told is normal dose in UK. I was struggling with nausea but I am also on

Sulfasalazine which I think was the cause of the nausea. Hope that helps.

Dodi

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Bluepegasus

Thank you all for these posts as I’ve been struggling with nausea and migraine on MTX. I was told to take the extra folic acid but thought I must have heard wrongly as it was such a big increase from one a week to every day.

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Jackadoodle

Hi 5mg of folic acid every day apart from MTX day increase dosage with clinical advice if you have mouth ulcers as in my case it cleared them up.

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Wrh03

I’m just 5mg once a week, 24hrs after MTX. I’m in Australia. Ginger helps settle my nausea.

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Lesleyellen1964

How do you take the ginger? Is it raw ?

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regina79

it's a capsule

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Lesleyellen1964

Aw right, thanks. I have raw ginger on standby to chew incase I feel nauseous and Ginger Beer as a back up. Non-alcoholic of course! 😬

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Wrh03

You can make tea. Take raw ginger slices and steep in hot water (like a teabag). The longer you leave it, the stronger it gets. You can also add to food, but I find the tea most soothing for nausea. Best wishes

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Lesleyellen1964

Thank you 🙏🙏💖

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Caravan17

I take folic acid once a week 5mg on a Friday and methotrexate on a Monday

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Theziggy
Theziggy
in reply to Caravan17

I am on one 5 mg of Folic Acid 48 hours after taking Methotrexate, strange, the advice handout the Rheumatologist gave me says (specify day - not Monday)

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Evaflo10s

I take 5mg every day ( except injection day) . I’m on 25mg MTX.

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Julie_kiwi

I take 5mg daily except 'Methotrexate Monday', certainly helped calm my nausea.

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Oneta

I have MTX on Friday and on Sunday 10mg of folic acid per week and all good here.

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JTRA

Hi Regina. I take 5mg folic on the 6 days when not taking my methotrexate-on that day I also take 2 paracetamols with the methotrexate which I take on Friday evening as I usually get headaches-if I wake up after 4. hrs I take 2 more paracetamols-this has helped eliminate the headaches/migraine side effects. Hope that works for you!

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Happy5

Interesting, was suggested I take my 5mg Folic Acid daily apart from MTX day,

when I was dealing with nausea side effect from MTX.

Hope it improves for you.

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RA2002

I take 3 x 5mg tablets weekly, the day after my Etanercept injection. I have never experienced any side effects. I am also taking Methotrexate by injection. Due to some deterioration, yesterday my Consultant has added Hydroxychloroquine 200 mg 7 days a week into the mix but I can't comment on that yet. As I also have Osteoporosis I take ADCAL-D3 daily and she has added Alendronic Acid 1 x 70 mg tablet per week - this has given me some sharp pain behind the breastbone/heartburn (?) and definitely nausea. I am keeping a close eye on this as I approach the third dose this Saturday.

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Artfanatic
Artfanatic
in reply to RA2002

Hi, be careful how long you're on Allendronic acid tablets-NICE recommend 3-5years max. I was one of the small %of women who first started taking similar heavy Calcium Ibandronic acid tablets to counteract Osteoporosis many years ago & was left on it without them realising the side effects. Unfortunately I recently broke my right femur in a not too spectacular fall getting out of the shower & they have attributed the weakness that caused this break to the Ibandronic Acid tablets! They also discovered thickening of the other femur & 2 healed fractures which I didn't know I had! So beware how long you're on it for. Good luck with the rest of you're concoctions- I wasn't very good on Hydroxchloroquin!?

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RA2002
RA2002
in reply to Artfanatic

That’s really useful to know and I hope you are getting good treatment yourself. I won’t stay on the AI or H if they make me feel worse and I’ll monitor the length of time I stay on them.

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Dszabo

I take 1mg of folic acid everyday and 8 tablets, 2.5mg each once a week of methotrexate. I never noticed any stomach problems with taking it, if I did get any symptoms I probably attributed it to the methotrexate since it is as a chemotherapy drug.

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Hodc

Hi I have to take folic acid every day, apart from the day I take methotrexate.

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dozzer15

I take it every day except mtx day. I have done this for at least 10 years. My doctor says it's to counteract the damage mtx can do. I've never had a problem. I hope you go on ok, maybe it was just coincidence x

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Canadiangeese

I’m in Canada, 5 mg folic acid every day except methotrexate day. Started with 25 mg (10 methotrexate pills)which has now been reduced to 10 mg (4 methotrexate pills) but folic acid dosage has remained same regardless.

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regina79

It is indeed odd that they won't allow me to take Folic Acid the day after, when a lot of other people are taking it?! x

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marvalusxoxo

Mrs. Regina I actually don't take any at this time. I just make sure I take a high quality multivitamin every day.

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Artfanatic

I've only ever taken 7.5mg per wk over 3days so 3x 2.5mg tablet on Fri, Sat & Sun? That's been the case for 31 years,since I was diagnosed with RA, whether I was on Metho +Steroids or now Biologic injections of Abatacept & Metho? I've never heard of such high doses or taking for 5days? I'm lucky that I've never experienced any nausea? Hope you feel better & sort it out soon.

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regina79
regina79
in reply to Artfanatic

I'm baffled myself and also I don't get why I'm not allowed to take Folic Acid the day after Methotrexate.

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Fatfingers

Hi, I take 5mg folic once a week on a Friday and 15mg MTX on a Monday evening after food. My Consultant, I think gives this advice to keep it very simple for anyone she thinks looks a bit daft. This may change when I see her tomorrow. I did feel very nauseous for the first few months of MTX but it seems to have settled now.

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Shadqueen88

I take 1 mg of folic acid every day.

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ChaiNocchi

I take 2mg folic acid daily, 7 days a week. I also take 4 mg prednisone daily, and 20 mg oral methotrexate once a week.

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regina79

I find it so amazing that everyone is given rather different instructions on the use of Folic Acid!! AMAZED 😱😨😐

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KittyJ
KittyJ
in reply to regina79

I think alot depends on the side effects people are having, I started off on a couple of days but had such bad nausea for 5 days after mtx that it was increased to 6 days. The US has a different view to the U.K. too.

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regina79
regina79
in reply to KittyJ

It’s crazy. I don’t see how views on taking a supplement can be so different 😐

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KittyJ
KittyJ
in reply to regina79

I don’t take it as a supplement, I’m not deficient, it’s purely to stop the nausea/sickness in my case.

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nomoreheels

It's because there are no official guidelines. When folic acid is used as a supplement to reduce the side effects of MTX it's an unlicensed use. So it's the decision of the Rheumy to decide how much & how often it's taken.

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Eiram50

5mg every day except the day I take methotrexate. I actually thought that was the standard dose!

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fergie1963

I'm in the US and I take folic acid 3 mg 7days a week, and methotrexate 20 mg every Sunday.

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Nurse12

I was diagnosed with RA while living in the USA , my specialist prescribed me 10mg and it really helped, since moving back to the UK my new specialist gives me 5mg but this does not help as much.

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