Which day and what time to take methotrexate? ? - NRAS

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Which day and what time to take methotrexate? ?

Moomin8 profile image
Moomin8
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Hi

I am looking for opinions and experiences as to what time of day is best to take my 10mg of methotrexate. I am on wk5. I have been moving it forward a day at a time to taking it on a Wednesday, in a couple of weeks. I would like to enjoy my weekend! Also hoping to go back to work when my body starts behaving itself! My theory is that I'll work through feeling lousy? I have taken it after an evening meal but don't always eat much every evening and would rather eat my big meal lunchtime . I've just taken it after soup and bread at 2.30...let's see how it goes 😊

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Moomin8 profile image
Moomin8
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I take it by injections 25 Mg on friday 6.00 Pm . On sunday and monday I feel tired and sleep a lot.

I hate this medicines . But can't without it.

Wish you all the best.

XXBAS

Moomin8 profile image
Moomin8 in reply to bassiefromholland

Thank you for your reply- I currently take it in tablet form. I have mouth ulcers, which are unpleasant. I also take folic acid (5mg) 3 days later. Early days for me- I don't really know my reactions to it all as I was very unwell back in Dec/Jan. I had quite an aggressive start!!

helixhelix profile image
helixhelix

I used to take tablets, but the mouth ulcers drove me nuts so switched to injections and am no longer plagued by the little devils. I'm an evening person, so take it last thing at night so I sleep though the worst of it. And don't get up until 9.30 the following morning. But if you're on tablets then not a good idea to take them lying down.

Moomin8 profile image
Moomin8 in reply to helixhelix

Yes- I've just read that!! How long do you have to stand upright???

helixhelix profile image
helixhelix in reply to Moomin8

It's just to get them down into your stomach as quickly as possible, so not that long I'd guess. I'm afraid I used to cheat, and since I took them after my evening meal I just sat upright and took them as I finished eating.....

Moomin8 profile image
Moomin8 in reply to helixhelix

I try to drink copious amounts of water mtx day and day after...try to stay hydrated and flush it through! ! Feeling light - headed atm πŸ˜•

Creakywrists profile image
Creakywrists

I've always taken it on a Wednesday - it was the day I was first given it and I have stuck to it as it does help to feel less tired by the weekend.

I have played around with the times and even tried splitting the dose down into smaller amounts over a twelve hour period (I am on 20 mg) but the time that suits me best is taking the whole lot around 2 pm after lunch and I usually eat a bit more than normal first. I drink a lot of water with the tablets.

If I take it at night I still feel sick when I get up in the morning whereas this way it doesn't seem to take effect until after I am in bed asleep and I feel much better when I get up.

I had bad mouth ulcers to start with but my folic acid was put up to 6 days a week and I haven't had them since.

Moomin8 profile image
Moomin8 in reply to Creakywrists

I'm hoping for a similar outcome to you. I was advised by a clinical nurse at the hospital to take 3 days of 5mg folic acid rather than just one to help with the mouth ulcers but I read somewhere that it counteracts the effects of the methotrexate ?? This is all so confusing! Last week I took folic acid 3 days after and 5 days after mtx.....didn't help. I'll ask the doc (gp) when I visit next week re blood results.

helixhelix profile image
helixhelix in reply to Moomin8

Yes, it's a circle. MTX knocks out folic acid, so you can get too low and need to top it up. But too much folic acid can inhibit MTX from working as well as it should. So as with everything else with this pesky disease it's trial and error. My rheumy told me that she likes her patients to take as little folic acid as possible, and preferably not more mg in a week than mg of MTX. eg 15mg of MTX and 5mg of folic acid on 3 days

Moomin8 profile image
Moomin8 in reply to helixhelix

Thank you

So. ..If I took 10mg mtx I shouldn't have take 2 x 5mg of folic acid as it will have cancelled it out! No idea why it was suggested that I took 3x5mg folic acid by the clinical nurse?? Oh well, only did that this last week so I'll have to try and put up with the mouth ulcers πŸ˜•

Lee_Evenden profile image
Lee_Evenden in reply to Moomin8

I've been increased to folic acid x3 which I'm taking Sunday, Monday & Tuesday and I take 10mg mtx on Friday evening. I had to up the folic as I was feeling lousy all week and have had a couple of liver problems and low white cell count both caused by mtx.

Switching to injections soon in the hopes that it will at least cut out the sick feeling in my stomach if nothing else. At the mo I have Cyclizine as an anti sickness but it makes me quite drowsy

helixhelix profile image
helixhelix in reply to Moomin8

It's not an exact science, plus all rheumies have different views. So some people take loads more folic acid than MTX and it works well for them. So it's just a starting point. But you have to work out what's good for you and 3 x 5mg folic may be what you need.

nomoreheels profile image
nomoreheels in reply to Moomin8

No Moomin, the two don't cancel one another out. The folic acid is taken to replace the folate lost because MTX is a folate antagonist, it depletes the limited folate we store in our bodies & our healthy cells need folate to grow & divide. As well as modifying the disease MTX randomly attacks folate too & as a result losing these healthy cells can lead to side effects, hence the increase in the days it's taken, to reduce side effects. We're generally started MTX with folic acid only one or two days a week but depending on severity of side effects your Rheumy can suggest it's taken for more days. Hope that makes sense?

I'm on 17.5mg MTX but take 5mg folic acid 6 times weekly, that's 30mg folic acid, nearly twice my MTX dose but the MTX still works. My folate levels are ok, my liver is ok as is my red blood cell count. I also include folate rich foods in my diet so I also replenish with natural folate. There's no limit, it's difficult to have too much folate! Maybe reading through this editorial will explain more fully cochranelibrary.com/editori... (it's a US publication where 1mg folic acid is generally recommended not 5mg as it is here in the UK, just in case you wonder why you're prescribed 5mg daily).

Moomin8 profile image
Moomin8 in reply to nomoreheels

Thank you- you explained that clearly - I'll read that now ☺

Matilda7 profile image
Matilda7 in reply to Moomin8

Suggest you discuss your concerns with the clinical nurse before changing the dose of folate. She will have a better understanding of the whole picture than we can have here on this forum. Do you have a helpline link to her?

nomoreheels profile image
nomoreheels in reply to Matilda7

Good point! I was in no way suggesting she takes the initiative. Always be guided by the professionals, they're the ones who prescribe & direct what we take according to our needs, including supplements.

Moomin8 profile image
Moomin8 in reply to nomoreheels

I do understand what you meant, thank you. But the nurse didn't see me directly and I felt it was /is my decision as to what I do.

nomoreheels profile image
nomoreheels in reply to Moomin8

Oh good, but not ideal really, I much prefer to be seen, guess you feel the same.

Moomin8 profile image
Moomin8 in reply to nomoreheels

Definitely - We are all unique individuals who should be treated as such - not in such a general manner....In my opinion πŸ˜†but back in the real world....

Moomin8 profile image
Moomin8 in reply to Matilda7

I do- it was her I spoke to. But I've never met her...and another call she will a he! It's simply a helpline where clinical nurses answer πŸ˜•

Mish-da profile image
Mish-da in reply to Creakywrists

Are you still on Methotrexate just seen your post albeit a few years ago?!

Moomin8 profile image
Moomin8 in reply to Mish-da

Hi- I still have mtx (pen) but have had to stop for 3 weeks because my bloods were dreadful! All back to normal (whatever normal is πŸ™ƒ) so will go back on it at a reduced 15ml from 20ml.

chlopage profile image
chlopage

I currently split my dose of mtx 5mg Monday night, 5mg Tuesday morning.. And taking anti-sickness pills weds Thursday fri and sat along with 2.5mg of folic acid. I have my referral on Monday for the meteject! I'm sick of feeling and being sick on this medication.... :(

Creakywrists profile image
Creakywrists

Methotrexate continued to work for me though I had hydroxy added later. My inflammation levels have gone from very high to pretty low, and pain and mobility much better. Good luck !

VickyBM profile image
VickyBM

Hi,

I have MTX injections and administer them on Mondays. Just taken it about an hour ago. I took tablets about 18-months ago but made me really ill. It was suggested I try the injections about two months ago.

So far I have found that both Tuesday and Wednesday are a bit of a write off. I tried working through it but have reduced hours at work even more so that I can stay at home on a Tuesday so really hope that you can power through.

The upsides are great in that I'm much more mobile but side effects of drugs don't see to be alleviated even though I've taken them at different times of the day, with / without food etc.

Really hope you find the right solution for you. Good luck and very best wishes.

Moomin8 profile image
Moomin8

I am really interested in all of your experiences - I think my current lull is due to the 5 steroid injections and week course of prednisolone which I've had in the last couple of months...actually make that 6 weeks! I am still very sore and have some inflammation pretty much all over but although I've been told I can take 500mg Naproxen (taking omeprazole before) and or cocodamol when needed....I just find it so difficult to know what it's best to do. ...so I try and do without .

Ali_H profile image
Ali_H

Hi Moomin,

I take 20mg of MTX a week and 5mg of folic acid three days later. Initially I took my MTX with porridge and fresh ginger at Thursday breakfast time (working on the principle that I was going to be tired at the end of a working week so why ruin any other days!) and drank loads of water throughout Thursday- I still take my MTX on Thursdays at breakfast but don't bother with the porridge and ginger unless I really fancy it. I got mouth ulcers once, in the early days, and resolved them with Medijel gel and salt water mouth rinses. My naproxen tended to give me more bother but I only take it if I need it (which is thankfully rare and I reach for aspirin first as this works better for me). I still drink plenty of water through out the week, especially on Thursdays.

All the best

Ali

Moomin8 profile image
Moomin8 in reply to Ali_H

Sounds like a plan☺I was trying to slip the mtx round to a Wednesday, also, as I have been told by the consultant that if I do choose to have an odd glass of wine that I should avoid the day before, on, and the day after mtx. Therefore I'd like to have the weekend free- not that I've touched alcohol since the beginning of all of thisπŸ˜•Wishing you all the best ☺

gelderbs profile image
gelderbs

Hi, I have been taking if for a year now, on a Wednesday night after evening meal, and take my folic acid every day except for the Wednesday. I take 17.5 mg and have never had any side effect. My rheumy told me the folic acid is the trick to feeling fine. I also take Plasmoquine 200 mg, and Arcoxia. I am also on Enbrel injections since August last year once a week and it took close to 3 months before I could sense an improvement. I have never had any flair-ups since August and at this stage is feeling the best that I have ever been during the past 2 years.

I really hope everything will work out fine for you.

amulla1 profile image
amulla1

I take my 17.5mg MTX on Tuesday's after lunch with lots of water. And 5mg Folic acid all the other 6 days of the week. So far it has worked for me. Recently I have also changed my lifestyle totally in the hope of becoming totally drug free and pain free. Have become vegan, into Yoga everyday and am following The Paddison program for Rheumotoid arthritis which promises a drug free and pain free life. It's worth trying.

I hope this info helps.

Hope you all feel better with whatever lifestyle & medication that suits your body.

Sussexsteve profile image
Sussexsteve

Hi everyone, first post from me so here goes. I'm on 17.5 MTX injection, which I switched to from tablets to try and alleviate queasiness and fatigue. The crappy feeling continued so my rheumy suggested taking folic every day except MTX day. Tried this for several weeks now and it has helped a bit, however (there's always a "however" with this game it seems)some of my aches and pains are returning, especially in my hands, with one joint very inflamed. Of course it could just be a flare up, although for over two years I've been going along quite well, dog walkin, gardening etc. My suspicion is that the folic is "cancelling out" the MTX, so I am going back to just the one folic acid 72 hours after MTX day, so let's see what happens. If there's n oimprovement it's back to the experts. So far, there has never been any offer of alternatives to MTX, and rheumy have both been ecstatic over my bloods! I would really like to try biologics as they are supposed to be very effective. Back to original topic.......I have my injection Tuesday evening after a meal. Weds and Thurs I feel very tired, and queasiness comes and goes, but the weekends are fine! I would love to get off MTX (like everyone I guess) but I suppose whilst it's working generally, and cheap as chips, it will take some doing to persuade the meds to try alternatives.

Sorry for the ramble, love the blogs and learning from others' experiences. Good luck everyone.

nomoreheels profile image
nomoreheels in reply to Sussexsteve

Pleased you've joined us Sussexsteve, welcome! I've had various increases over the 7 years I've taken MTX & been prescribed folic acid once, twice & 6 days weekly, my current dose alongside 17.5mg. I'm not sure it's made so much difference to the efficacy, the disease itself can throw curveballs so personally the jury's out. I've recently come back down to my current dose from 20mg because of side effects & now I'm 5 weeks into being back at 17.5.mg all is right with the world again. It makes sense not taking folic acid the same day but if it depletes folate levels so much I don't think Rheumy's would condone supplementing up to 6 days, I've even heard of some prescribed 10mg (though fewer days). I'm sure there's some reduction of MTX dose, just not enough to make that much difference, it's just finding the correct balance that suits you. You may need an increase in dose or another DMARD adding, even a change in NSAID, but if yours takes a similar path to mine the odd joint can have a go then settle down as quickly as it came.

I'm fine on MTX, it's been a really good DMARD for me. I'd be more than disappointed if I was told it wasn't for me any more. I think you're right & I agree about tablets being cheap, not quite so for injections but now they're more frequently prescribed I've noticed the NHS drugs tariff cost of pens is reducing, compared to when I first changed over to subcut anyhow. If I had to I'd still pay for them if need be, rather than go back onto tablets! It's popularity is more down to results I think, it works well for many patients & the older DMARDs are similar cost wise.

I hope you can find a happy medium. I wouldn't be in too much of a rush to go onto biologics though, if MTX is your first DMARD & it seems you react well to it (well, the disease does) if it becomes necessary you've other DMARDs you have a chance to try before your Rheumy suggests going at the big guns. My theory is whilever I can be managed on DMARDs RD isn't getting the better of me. Whilst Anti-TNF's & biologics have been developed & licensed for a reason & are a godsend my thinking is that they're intended for those who have the disease worse than me (or haven't responded sufficiently to or not tolerated DMARDs). Plus they're not without side effects either & other issues & the qualifications are put in place a reason. I was fortunate to be diagnosed early & I think that's made a difference in how well I've responded to treatment. My concern is too many have lengthy waits to receive their diagnosis. As it is the disease is there grumbling away before we notice the first signs & improvements need be made to help the public to be aware & GP's recognising symptoms. I had no idea why my feet were inflamed & hurting so much but my GP was on it straight away, I was diagnosed & on treatment in just over a fortnight. This wasn't in the UK, I believe GP knowledge & different guidelines worked in my favour. The recommended time limit of 3 months for fast tracking to early diagnosis clinics seem to be slipping, the guidelines & awareness could do with an overhaul. Ooo I've ranted on now! I'm pleased you've decided to join in & hope to see you around more now you've broken your bat! :)

Sussexsteve profile image
Sussexsteve in reply to nomoreheels

Thanks for your comprehensive reply, it makes such a difference reading other people's experiences. I'm sure you are right about MTX, and in many ways I'm lucky as currently I don't take any NSAIDs or anything else for that matter. My bee in my bonnet re folic was because they made such a fuss about not taking it till 72 hrs after my MTX, then all of a sudden it's ok to take it 6 days a week, so what was that all about? My original diagnosis was almost good luck, my GP hadn't gone down the RA route, then by chance I saw a locum, and she suggested tests and here we are. I've very little criticism of the NHS as such, only of those who starve it of resources and sell off/privatise bits to the benefit of their mates, but that's a whole new discussion and probably not for this forum!

nomoreheels profile image
nomoreheels in reply to Sussexsteve

By comprehensive you mean long....don't worry I do ramble sometimes lol! If my experience is anything to go by my Consultant wanted to see how I reacted to my initial dose of 15mg MTX (it was my second DMARD) with the least possible dose of folic acid. I suppose if you don't get side effects there's less need to risk losing any of the MTX dose if that makes sense? I started with taking it the day after MTX but he would only increase it to the day before as well, my present Rheumy automatically prescribed 6 times a week, so I think it's just how the Rheumy feels about supplementing.

Moomin8 profile image
Moomin8 in reply to Sussexsteve

Great to hear from you ☺It's a minefield this RA treatment...I hate self-medicating, but with my comprehensive medicine cabinet- it would be far too easy! I wish the experts would have a similar path to tread.

Karen77 profile image
Karen77

I take my MTX first thing Sunday morning. It's just easy to remember to take it then. I'm on tablets right now. I do remember being told to drink lots of water on MTX day, so I try to be conscious of that. I don't notice any side effects to MTX.

zannie profile image
zannie

Hi,

I have been on MTX for a year now, and have moved my date from Friday to Thursday

to keep the weekend free for a drink. I take my tablets 7.5mg. after breakfast, and have a folic acid tablet after Breakfast, on the other six days of the week. My routine works like a dream. , you have to try and see what suits you best.

Best of luck. XX

Moomin8 profile image
Moomin8

May I ask: what dose of folic acid?

nomoreheels profile image
nomoreheels in reply to Moomin8

I would think it's 5mg, as per guidelines, zannie lives here in the UK.

Tee-Cee profile image
Tee-Cee

Hello, I take my Mtx injection on a Monday because it begins with a M. Then I will not forget.

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