Methotrexate & Folic Acid: I have been taking... - NRAS

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Methotrexate & Folic Acid

caz3333 profile image
17 Replies

I have been taking methotrexate for 6 weeks now, 6 tablets on the same day of the week and then the folic acid on the other 5 days. I am a bit baffled as to the dose of the folic acid though. My rheumatologist has prescribed the dose as 5mg each day and 15mg methotrexate a week. I am not seeing the rheumatologist nurse till next week, at which point I will be talking through a lot of things, but was wondering if 5mg every day is a bit high? As I have googled RD and it mentions a 5mg dose for the week not every day?

The methotrexate doesn't seem to be doing much good so may consider coming off it anyway as I don't think it's worth all the side effects it causes if it's not helping me but was wondering if anyone could please advise what dose of folic acid you take. Many thanks.

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sylvi profile image
sylvi

First off darling it takes as much as 12 weeks for the mtx to get into your system so please don't give up yet. It is ok to take 5mg a day when your not taking your mtx, bit talk to your rheumy when you next see the, They must have a reason for telling you to take everyday except mtx day.xxxxx

Hi caz3333

I'm on exactly the same Methotrexate and folic acid dosage as you, starting in March 2015. I'm also taking Sulfasalazine, Hydroxychloroquine, Omeprazole and Naproxen. It took about 6 months for the MTX to have much effect, until then I needed steroid injections as well.

It's my understanding that the folic acid counters some of the side-effects of the MTX. There's a fairly good article about it here:

arthritis.org/living-with-a...

Stay with it Caz, it takes a while but hopefully you'll do as well as me when the drugs take effect. You just have to be patient!

Mo

helixhelix profile image
helixhelix

The dose of folic acid is very variable - from one 5mg tablet a week to six, or even more with 10mg tablets. We're all different in how we react to drugs, and our overall general health and so on, so the docs adjust accordingly. I started on one tablet a week, had to go up to four to cope with side effects, and am now back down to one.

When you google things, do stick to the better sites like NRAS.org.uk, or NHS choices, or arthritisresearchuk.org or good bloggers like RAwarrior.

And the side effects can wear off, plus as other have said it can take up to six months for the drugs to really work. So it's early days for you - hang in there!

caz3333 profile image
caz3333

Thank you everyone for your replies and words of encouragement. I will stick with the methotrexate for now and speak to the rheumatoid nurse next week and talk through things with her. I am also taking gabberpentin, lansoprozole and 3.5mg prednisolone as trying to wean myself off the steroids very gradually. When the pain is really bad in my shoulder I have to take strong painkillers too. The flare ups are still every 2-3 weeks and I was hoping they would have calmed down a bit by now but I suppose it's early days.

I don't generally Google stuff but couldn't find any info on what the normal dose of folic acid should be. I realise everyone is different so maybe my bloods showed I need it to be 5mg a day as I've never experienced nausea with any of the drugs I take apart from Tramadol which made me feel dreadful.

Thanks again for this wonderful site and also the nras.org.uk which I have joined with my mum who also suffers RD! 🌞

flow4 profile image
flow4

I'm on the same doses as you, caz. I was on oral mtx but have just swapped to injection, plus extra folic acid, to try to stop the nausea.

The trouble with googling folic acid is that most info is about taking it while pregnant! The doses then are much smaller than we need alongside mtx.

I've been taking it for 9-10 weeks now, and am starting to feel better. I know that at 6 weeks I was thinking "Hmm, this doesn't seem to be working"! Hopefully you'll have a similar change in the next month or so too. :)

moomie profile image
moomie

I have just had my folic acid increased to every day apart from mtx day. Was on one a week. It has helped with side effects.

Like others have said it is still early days for the mtx to have effect. Hang on in there.

.

caz3333 profile image
caz3333

Thanks Moomie I appreciate your reply. I will hang on a bit longer with the methotrexate as I realise it's early days but in the booklet it says effect can be from 3 wks and I started taking it on the 5 April so it's actually 7 weeks now and was hoping for an improvement but I am a bit impatient! It just gets me so down when my shoulder flares up as its so debilitating and was so looking forward to this weekend and now I am in so much pain I can hardly get dressed. Plans for going to the Garden Centre are now off the agenda till hopefully next weekend! X

caz3333 profile image
caz3333

Thanks flow4 for your reply, I will stick with it for now. I started taking it on the 5 April so it's been 7 weeks I guess. I am a little impatient but as the timescale given in the methotrexate booklet stated effect is usually between 3-12 weeks I was hoping for a sign of improvement by now. It's just so depressing as I've been pinning my hopes on it working and taking a cocktail of drugs and feel no better! In dreadful pain at the moment with my shoulder so feeling sorry for myself I guess! ☹️

Patsy-57 profile image
Patsy-57

Hi, I can only say the same good advice as the others have given you. The hospital will only say the same. This disease is very frustrating and I know how you are feeling. You want to get a medication that works and you can get your life back on track. Most RA drugs take at least 3 months to get into your system. Just remember we are all here for you in good times and bad.

Patsy 57

nomoreheels profile image
nomoreheels

Late to this Caz but it is an approximation how quickly MTX becomes effective, 12 weeks is usually given but you've probably worked that out now though! As with most DMARDs they can take some getting used to, I'm going through the same myself since sulfasalazine was added to MTX a few weeks ago & finding it a bit hard going with little benefit yet but I'll get there with a strengthened resolve. It's a reality check for me because I've thankfully only needed MTX til now, currently on 17.5mg so not done bad considering I've been taking it 7 years. With luck on your side it shouldn't be too long before you reap the benefits though I know it feels an age when you're feeling like you do. If tablets & your folic acid doesn't ease side effects there is the option that you could change over to injections, if MTX does work well otherwise for you. I changed over 6 years ago & like many have done so much better as it goes straight into the blood stream so it's worth asking if you could try changing if side effects continue but you react well to it. I used to take my tablets as 2 with breakfast, lunch & dinner which really helped, others take their full dose at night before bed. That said I was advised not to do that as they'd sit on my tum & may make nausea worse but many do & seem to find it better. Maybe if you try different ways, see if it helps at all?

The recommended dose for folic acid here in the UK is 5mg daily, which is only available on prescription, though it is up to each Rheumy how often it's suggested you take it. I also started off on 15mg MTX & took folic acid just the day after MTX, then that was increased to the day before & the day after but my current Rheumy prefers every day except the day I inject & that suits me fine! If you've been doing a general search it may be that you've happened upon US sites where normally only 1mg daily or even weekly in some cases is recommended. As others have said it's best to keep to recommended sites, particularly those in the UK as doses & med names may differ or be less familiar, it's less confusing too. Another tip, enter what you're looking for in your search engine & add UK at the end, that will prioritise UK sites in your listing.

If there's anything else just ask away, no matter how daft your question may seem it's all relative & many of us know how you're feeling just now! ;)

NanaFifi profile image
NanaFifi in reply to nomoreheels

I'm really surprised how much folic acid everyone is taking!? I am now on 20mg of mtx by injection and only one 5mg dose of folic acid 72 hours after the mtx. ??

nomoreheels profile image
nomoreheels in reply to NanaFifi

It does seem to vary according to how much Rheumy's feel it's helpful over reducing the efficacy of MTX. As I mentioned my previous Consultants (in Spain) considered 10mg a week was adequate enough in relation to my dose of MTX though at that time it wasn't as high as I've needed here for as long. What I find more surprising is it would seem only 1 or 2mg is recommended in some countries but they're more likely to prescribe folinic acid if the lower dose folic acid doesn't help.

caz3333 profile image
caz3333 in reply to nomoreheels

Thanks nomoreheels for your words of encouragement. I suppose I haven't given the methotrexate time yet. I haven't felt nauseous but have suffered from diarrhoea a bit as a side effect but am willing to put up with that if it works and I become pain free and less stiff in time. I will see what the rheumatoid nurse says next week and try to remain positive but it is hard as I am 54 and some days feel 84 same age as my dad! Who is actually fitter than me as he is on no medication whatsoever!

Tomorrow is another day and I am at least thankful for a correct diagnosis now and hopefully I will soon start to feel a lot better. I will try not to google and if I do put UK on the end! Take care and glad the methotrexate has been working for you. X

Martinilady profile image
Martinilady

I have had several attempts to stick with Methx but after having to take sick leave from work too often with pains in the gut sickness & diarehoe (excus spelling) Ive had enough. The pains in the stomach are the worst and stay with me for several days. Being sick prevents me from taking my other RA meds so I get aches & pains in all my joints - its like a vicious circle. Last week I had to have the Doc out to do house callas I was so poorly. I live on my own but my 17yr old g/son came over to help - thank goodness he didnt have any exams that particular day !

Anyway to answer yoyr question I take only Folic acis one day a week. I think its 5mg. Im not at home at moment so cant check.

jane1976 profile image
jane1976

Every time I've been on methotrexate I have been taking 5mg each day I don't take the methotrexate. Xx

PFKAAde profile image
PFKAAde

Hi caz

Very late to this one but when I was on MTX from very early on in the disease process I took 5mg folic acid every day apart from MTX day.

For me the MTX didn't seem to be doing anything at 15 - 16 weeks and I was bad enough to be admitted to hospital for tests, and then literally overnight it seemed to kick in. First night in the hospital I woke up at 4am and the bed was soaking wet. (night-sweats not a bladder problem 😀), second night it was bone dry. And I was ok for some time then.

So as you already know, don't give up and don't worry about the folic acid dose either. 💊💉

Regards

Ade

caz3333 profile image
caz3333 in reply to PFKAAde

Hi Ade

Thanks for your reply. It's good to hear other people are on 5mg folic acid every day apart from the day you take the methotrexate. I will carry on with it for now and hope that in a few more weeks time they may kick in. I said I would give it at least 12 weeks then decide which is going to be the best way forward for me.

It will also depend on how my liver is reacting to the Mtx and I will be asking the rheumy nurse next week how things are looking. I've not had a drop of alcohol since starting it so I am hoping that it's fairing well with all these drugs!

Glad to hear things worked out ok for you and still remains the case. Take care. X

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