This is my second post here. I got such a fantastic response (quantity, quality and humanity) to the first one I thought I'd ask my silly questions about methotrexate here.
Okay, I received my starting prescription for methotrexate today in the post and found a pharmacy that had it in stock (along with prednisolone - the other item on the script), which was the third I visited.
I started taking the prednisolone (10 mg/day, tapering to 2.5mg over six weeks) immediately. I thought I might begin the methotrexate (6 x 2.5 mg/week for 3 months) tomorrow.
I've read that if you are going to get side effects from methotrexate they are worst in the day or two after you take it, and so you are best to choose a day of the week where it matters less if you feel sick for the next couple of days. i.e. If Tuesday and Wednesday are the least critical days in your week (you can afford to be below par) then you should take your methotrexate on Monday.
I haven't heard this from 'official' sources. Is there any truth in this claim or does it make no difference?
The other thing I've read is that if you are going to get side effects you will reduce the severity by 'splitting' the dose, i.e. taking the tablets on the designated day, but half in the morning and half in the evening. Has anyone tried this, or is it another myth?
And my third question concerns folic acid. The pharmacist suggested I take it two days after the methotrexate because it's less likely to interfere with the efficacy of methotrexate that way, but will still work to mitigate side effects. I haven't heard this recommendation before, but I guess if it comes from a pharmacist it's probably sound advice.
Thank you in advance, wonderful people!
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Aporiac
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I only took mtx for a short time but it did make me feel so tired and wiped out the next day (tablets made me feel sick and bad tummy too, but everyone is different).
So yes I took it on a Friday night so had the weekend to get over it.
I took it early evening so could sleep through roughest part.
Tried to drink alot of water the day I took it.
Took folic acid for 6 days a week and not the day I took mtx.
I think some people might split the dose but I never did.
It works so well for some people I hope its the same for you x
Has your Rheumatology team told you when and how to take it? I was told Weds by my nurse but changed it to Saturday as that was the day which would cause the least problems for me if I got any after effects. I was also told to take it before I go to bed . I recall I took it the first Saturday after I got the prescription although I can't remember how long I had to wait . Re folic acid - I was told to take it 5 days a week but not on the day I take the mtx and the day after.
Hope this helps. Wishing you well, and I hope you get relief soon, with no ill effects xx
There was no guidance on when to take the mtx beyond "once a week on the same day."
A number of other people here have mentioned taking the tablet before bedtime, so I think I'll try that. I'll probably also postpone starting until Monday based on the advice that it can make a difference (i.e. if you get side effects, they are worst on the day/following day). Drinking plenty of water seems like a good tip because it's cheap & easy, may help and certainly can't harm!
My prescription for folic acid is 5 mg once a week. I guess I'll need to query that if I get nasty side effects because the first suggestion seems to be to up the folic acid.
You're welcome. I'm on 5mg folic every day for 5 days a week. That was when I first started mtx and was on 20 mg a week ( or it might have been 25 can't remember 😁) It's now down to 10 mg a week but the folic had never been reduced .
I was advised to take MTX around 8 PM, so that I slept through the worse side effects and yes take it on an evening before a day when you have less to do. I also found being well hydrated and eating carbs helped to compensate for some of the side effects. Eating small and often was best too.
Some people swear by taking folic acid with the side effects of MTX being reduced, but others see no benefit.
You may find you have no or few side effects, but best to be prepared.
Thank you for your best wishes, and for sharing your own experiences - it's greatly appreciated.
Hi A .. I didn’t get any side effects at first on the lower dose and now and again I got a bit of a methotrexate hangover . Mainly fatigue. I personally took mine at lunch time so by the time I went to bed the worst would be over by the next day . I took mine mid week as I like a drink now and again but not around the days of Methotrexate. I drink loads of water the day before and the day of methotrexate. Everyone is different where side effects are concerned. I never split the dose.
Folic acid I took every day except methotrexate day.
I'm teetotal these days, so that simplifies picking days when I'm not drinking. Thanks for the water tip.
I guess I should wait and see what happens and take it from there with the various suggestions people have made, eventually referring it back to my Rheumy team if I can't sort things out myself.
Hi Aporiac, I hope you find methotrexate helpful for you.
I take it on a Monday morning (haven’t heard about taking it in the evening before, so that’s helpful from the others) and take folic acid Weds through to Sunday.
Everyone reacts differently so you may be absolutely fine.
I was taking a one day a week bone tablet Alendronic Acid on a Tuesday simply because I received the tablets that day. When I started methotrexate I swallowed those on a Tuesday as well to get everything done and not having to remember different days. Folic acid every day except methotrexate day. Never had side effects.
Firstly, your questions aren't silly. They are important and you need to be happy that you are doing the right thing. I have always taken mine about an hour before I go to bed as it is better to sleep through the following few hours. I have never heard of splitting the dose. I can't see the point in that anyway. I only take 1 folic acid tablet a week the day after mxt. All the best.
I started taking my tablets after tea so that it was after food (took my Hydroxychloroquine after breakfast) and have tried various times of day since being on the injections.
I find that the side effects (mostly foggy head/hangover feeling) seem to kick in the next day, about 24 hours after. They have settled since the early days but are still there to some extent.
Initially I had some low mood/tearfullness for a couple of days after each dose so my Folic Acid was increased from 1 to 6 days a week and that sorted it out. Hopefully you'll have a review with the nurse after a few weeks; if not don't hesitate to contact them if you have any issues but hopefully it will suit you 😊
I take my methotrexate (20mg) on Monday evening and 20mg folic acid 24 hours later. The side effects were worse, mainly feeling foggy and slightly nauseous, the first couple of times, but I now tolerate it quite well, just slightly foggy on Tuesday.
I have really struggled with methotrexate so my nurse added all the following as advice Either take at night or split dose - once I was on injections I had them in the evening
Folic acid 6 days a week apart from MTX day
Lots of fluids for the day after and if you do feel sick then Male sure you have a stock of whatever food you do feel you can manage.
Take it before the weekend if you are able to have restful weekend - I have three small children so actually tried to take it at the beginning of the week!!
You can potentially have anti-sickness
They also tried to get me to increase my exercise in the hope I would feel better I think
Maybe just see how you go. I think far more people get on fine with it than struggle
It might be easier starting it while you are on the Prednisolone anyway as it may counter some of the possible side effects
I have been taking Methotrexate for the last five years, and have been very lucky as I have never really had any side effects. I currently take 15 mgs a week on a Wednesday (but its up to you which day you choose), and I split my dose - 3 tablets in the morning with breakfast, and 3 in the evening before I go to bed. Still work fine. I also take Folic Acid 6 days a week except on Metho day. I am also on Leflumonide every day. If you have really bad reactions tell your rheumy team - I cant take Sulphasalazine - I had horrendous reactions to that. There are other drugs out there if Metho doesn't work for you - we are all different, and we react in different ways.
Oh my goodness. We are all soooo different. I get no problems at all with Methotrexate and honestly don’t always have food with it which I’m sure I should. I take 7.5 mg and 5 mg folic acid the next day. Once a week that is. You could very well breeze through it. Just watch out with tapering your steroids. You can get some symptoms coming back but best to follow instructions. It’s a relatively short course so you should be fine. Never be afraid to call your rheumy nurses. They are experienced (seen it all before) if you’re unsure about anything. You could have a lot of tweaking of meds to do before you get to a comfortable level. Don’t be surprised if and when meds are changed. Some of us take better to certain drugs than others. Methotrexate is very effective, widely used but not the only option. I tried Lefludomide. Yuk!!! Felt dreadful with it. Some people are fine with it. Good luck!. You’ll be helping others on this site before you know it 😁😁.
Hi, I can't quite remember when I took my tablets because I am on the injections for such a long time now. I take Folic Acid on six days a week. Just not the day of MTX. Using the injection pen instead of tablets was good for me, fewer side effects. Not that they were severe anyway. Good luck with MTX and I hope it will start working soon. All the best.
Hi when I was prescribed methotrexate the consultant said to take it on a Friday so any ill effects wouldn't interfere with work & to take 1 5mg folic acid 2 days later.
I got fed up of my weekends being spoilt as I felt so sick & a massive brain fog all weekend & my legs felt like I'm wading through mud, I changed my day to a Wednesday (I haven't been in work since December) so I'd get my weekends back.
The nausea & brain fog is even worse now with the sickness lasting between 5 - 7 days. Reading posts on here about how effective folic acid is with the side effects I asked the medic at the drs if I need to increase my folic acid & they said no my bloods didn't show I needed to,
Wondering whether to buy some from the chemist to see if this will help but when I enquired before they said it was best to get a blood test first.
I don't have a rheumy team to contact as I'd paid to go private as I wasn't getting anywhere with the gp, I'm on the NHS waiting list which I was told has a 77 week wait! So it'll be around Christmas 2022 before I see anyone.
This group has been amazing with information & advice x
My doctor had me take methotrexate at bedtime; he said that if I was going to have nausea, I would sleep through it. I asked him about taking 1/2 in the morning and 1/2 at night; he didn’t recommend that because it would cause my liver to have to process it twice. Seems I’m really susceptible to side effects, but surprisingly, I had none! I’ve since switched doctors (1st one left the practice and I’m now seeing his replacement) and she changed me to methotrexate injections, which seemed to be more effective. Good luck!
When I started MTX two years ago, I took it Friday evenings after reading the advice here. But, because I have never perceived day-dependent side effects (just, perhaps, a little hair loss overall), this spring I changed when I take it to Saturday mornings before breakfast, which is when I take my vitamins.
My rheumy upped my folic acid to 3 mg/daily because of the hair. Apparently not every rheumy thinks FA interferes with MTX. And this level of FA seems to have stopped the hair loss.
I like taking MTX on Saturday morning because I’m less likely to be “out and about” as I am on a Friday evening. Although, thanks to COVID, I’m less like to be out and about period!
You might not feel any side effects. But, just in case, a Friday or Saturday evening might not be a bad idea to start.
Just remembered: the first couple of weeks I took MTX, I had the teeniest of stomachaches the next day. My rheumy upped the initial dose of folic acid of 1 mg/daily to 2 mg. That fixed that. Then, after I started seeing more strands of hair on my hands in the shower, we upped the FA to 3 mg/daily and that fixed that.
You need to take them as prescribed l started on tablets 10 yrs ago, now on injections it is normal to not take the folic acid on the day you have the methotrexate and then restart the following day. I have never had any side effects l hope you don't
Hi I’ll put my experience into the mix. I started on tablets. I was told which day of the week to take them. It was to be at 22:00 and no food after 20:00. Specialist nurse said this was due to blood monitoring so they knew exactly when I’d taken the dose if my bloods played up. Folic acid 5mg x 3 days leading up to methotrexate day. I had nausea for a while it settled then returned. So bad I think it got psychological as I started to feel nauseous just putting the tablets in my mouth. I was then switched to injections that’s helped a lot. Days have changed as I prefer not to to have a work day after taking it and again when I started Imraldi as they wanted to have a couple of days in between. I was also informed to drink 2 litres of water a day. This was upped to 3 whilst my kidneys weren’t behaving. I used to still drink alcohol but have given up for 6 months now as I feel my body has enough to deal with. Still get the odd bouts of nausea but probably my age lol. Good luck I’m sure you will find a method to suit you. Reading the replies we are all so different.
Wishing you all the best Aporiac with your MTX journey, hope all goes well. Will be starting mine soon too (by injection, waiting for them to arrive) admit to being very apprehensive. Thank goodness for the kind people on this forum who offer their advice and encouragement!!
I just wrote something very similar about feeling apprehensive and alone, and finding this forum very helpful and encouraging. It sounds like I'm just a tiny bit ahead of you, and so I don't have much experience on which to base advice, except to say that one advantage of being apprehensive is that reality turns out to be something of a relief. I very much hope it's the same for you. All the best
Thank you Aporiac - here's hoping your MTX queasiness reduces week by week as you get used to it. I know exactly what you mean about steroids - I'm on another mini course and like you I go from "90" and limping to practically scooting about within hours. All the best
Wow - So many gems here (people and knowledge/wisdom)!
It's interesting how different people are in terms of experiences/responses, but that in itself is useful to know, and also all the different recourses available if things aren't going very well.
I'd decided yesterday to delay beginning methotrexate until Monday because I have fewer commitments at the start of week than the end, and to take it at bedtime. However, when I took my second prednisolone dose this morning at around 8 am I suddenly though "Oh stuff it - just take the damn tablets and ride it out if necessary!" So I did!
The mtx didn't agree with my stomach - I got indigestion and mild reflux after about 15 minutes, which went on for a good hour. However, I had a fatty bacon roll for breakfast, which was tasty, but not the best choice for easy on the digestion! I was then fine until around midday when I began to feel mildly nauseous, which has pretty-much stuck with me all day (it's now 9 o'clock at night and it's still there). It's never been worse than mild travel sickness - not pleasant, but if that's as bad as it's going to get I can deal with it. The queasiness hovers at a level where I distinctly notice it, but not bad enough to start me retching, for example. Hopefully, it will be gone by tomorrow morning.
I've been out and about a lot today so haven't drunk as much water as I intended, and I haven't really eaten sensibly (e.g. I had a sausage roll, coffee and two donuts from Gregs for lunch before I stopped and thought, "that probably wasn't very smart!"). I'll take a bit more care next week.
The prednisolone has kicked in, which really lifted my mood. It's so lovely being in less pain! I had to go back to the pharmacy where I picked up my tablets yesterday because they were a bit short and so owed me some. I parked in the same place, and walked the same 100 yards, but today without stopping, at twice the speed, and hardly limping! Anyone watching from a distance yesterday would have thought I was at least 90 years old! I love steroids.
Thank you everyone for sharing your experiences and knowledge, and for the encouraging and kind words. A week ago I was feeling apprehensive to the point of fearfulness, and most decidedly lost and alone. I don't feel that any more.
hi been on tablets then injections for two years now works well, feel weiry next day but fortunately the day I take is a Friday so got weekend to relax if need be. good luck with yours, keep us posted x
Hi Flor1rence. I've heard that administering by injection reduces the side effects and improves efficacy for some people. So far the only thing I've really noticed is the nausea, which was worst for the first day, but that I still get in waves, especially after eating. Some people report side effects reducing over time, but even at the current level they'd be perfectly tolerable to me if the MTX 'fixes' the RA (too early to say anything about that yet)! Thank you for telling me about your experiences. I will be sure to keep the forum posted - it's a fantastic place to chat and exchange information. x
Thank you Aporiac for the update, I am currently taking hydroxy and sulphasalizine but had an appointment with consultant today who has now put me on mtx and folic acid as my knee is painful and swollen and other meds are not working. Also walking as if I am 90. Feeling apprehensive but reading all these lovely comments and suggestions with hope. Hope it works well for you. X
I have the same experience of getting hope from the positive stories and positive people here. I'm very sorry to hear about your knee, and pray the new treatment alleviates the pain and swelling, and you find your young dancing feet in due course. Good luck x
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