Well a month after being told I'd get a prescription for methotrexate I'm still chasing it up. I spoke to the consultant on the phone on Thursday and he said I could pick it up at the hospital pharmacy on Friday. I call them a few times yesterday and today and it's not there (didn't want the 20 mile round trip for nothing). Anyhow, hoping that I'll get it very soon so before I do I'm looking for your tips:
What time of the day do you take it.
Do you need to choose a day that you're not working/not working the next day so you're having to work while feeling lousy.
How long do you take it before you know it's not working/side effects are not getting better,
How ill do most people feel when they start taking it- does it get better.
Anything else that you don't get told (bearing in mind I've not been given any information). Hoping I get a leaflet when I do get the prescription.
Thanks in advance
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Gottarelax
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I’ve only been on MTX since April so only have limited info to share.
Initially 17.5mgs then upped to 20mgs late July. When I started I took it in the late afternoon expecting to feel poorly and hoped to sleep through the worst of it. But I didn’t have any issues/stomach upset/ brain fog etc so I started taking them when I woke up in a morning. Not sure why but I take them on a Tuesday morning.
About a month in I had a couple of mouth ulcers, but other than that all good.
I had steriods before I started started MTX and tapered them down over 10 weeks, so as steriods where going down the MTX was taking over.
For me the MTX plateaued at around 4 months. The difference in my joints/ pain from diagnosis to late July/April was huge, but it’s not the pain free state I acheived whilst on steriods. After my MTX was increased the mouth ulcers were more frequent and they upped my folic acid to 3 days a week which did the trick.
My bloods throughout were fine. Fortnightly tests for 6 weeks, then monthly until 6 month mark then once a quarter.
Hopefully you will be like me and tolerate it quite well.
I've been on mtx for just over a year and a half. I don't think it is standard advice, but my rheumy recommended taking it with food, and most people seem to prefer to take it in the evening. So I take mine immediately after my evening meal and swill it down with plenty of water. For the first couple of weeks, I felt a bit tired and headachey the following day. Since then I have felt fine. My white cell count has dropped a tiny bit low a couple of times but is always back in the normal range by the next blood test.
I had a noticeable improvement of my symptoms within about 9 or 10 weeks, but then plateaued. Rheumy was convinced my residual problems were osteo so she wouldn't up my meds or change them. Then, quite suddenly after 11 months, I felt massively better. I hadn't realised how tired I had been until I wasn't anymore, my joints barely bothered me at all and my brain worked! Sadly, I am just starting to get a bit of swelling in my fingers again, but I am hoping it is just a blip.
Good luck. If it doesn't work for you, tell your team. But don't be too afraid. My advice is to assume it will work and that you won't get too many side effects. Stress is your enemy, so try to avoid it!
I’ve been on MTX for around 6yrs. I’ve never had any side effects, other than my hair is a bit finer. I take mine on Wednesday evenings around 8:30pm, the idea was to sleep through the potential fatigue. Early on in the pandemic the advice was to stop MTX if anyone in the house had covid symptoms. My hubby did so I held off pending his PCR. It was negative so I resumed that morning, and found myself back in bed for 4hrs, so it maybe that I do get the fatigue but sleep through it. I initially started on 15mg, then 20mg and since 2018 been raking 25mg. I chose Wednesdays because I was advised to have at least 48hrs apart from my biologic which I take on Saturdays. I worked as a nurse, so would be up at 5:30am getting ready for work, and never had any issues. It took around 6 weeks to notice much improvement, but when my doses have been increased the flares have settled really quick. There are plenty others like myself who get no side effects, but we tend not to hear frr et on them as they are getting on with life. Hopefully you will be lucky too. I’ve just missed 2 weeks MTX as advised after my latest booster, and couldn’t wait to get back on it. If you do get side effects, it’s worth trying injections 🤗
I take my 20mg injection in the evening and take folic acid every day but the day I inject. I started on 10 mg tablets but felt queasy and still had flares so it was increased gradually.
I don't work so I inject mid week as I like my allowed 14 units of alcohol a week and most social things happen at the weekend. (I only have two, rarely 3, units in any one day.
It has controlled my RA, I think, but I do feel queasy still sometimes and have the odd day of headache and feeling off. I wasn't in any pain when I started methotrexate but had had bad pain and very strong positive blood tests previously, so I can't say how quickly it would have worked.
It takes time to get it all right and accept the diagnosis. I don't like the fact that you're having trouble getting the medication. Hope they pull their fingers out pronto.
Please……Change your mindset that you are going to feel awful….Just take the Mtx when you get it…..& then just get on with your normal life…..but don’t start counting the days ….it can take a few months to get up to speed….but like all good things it’s worth the wait. Not everyone feels bad with Mtx…unfortunately you will have to search really hard to find posts from people saying “I took Mtx for the first time this week & I feel fine”……..because they are off getting on with their life….as I have said many times…..if you look forward to feeling rotten….. you probably will.Remember…..lot of bad reactions to many medications are just that….anxiety…not the drug at all….so try to arrange to do somethings you enjoy during the days after taking it…& you will hopefully be fine. I took it for years,& the worst I ever experienced was a headache…..& as I’ve always had headaches….I’m not even sure Mtx caused them.I took it after dinner…but just because that suited me……no clinical reason.Unluckily after 7 years it just stopped working for me…..so I moved on to a Biologic…& that was going fine until the Covid vaccinations…but my RA is still under control.Just make sure you keep well hydrated…….take your FA as prescribed……then I hope in a few months time you are able to tell us - all is going really well.Good Luck!
exactly this, don’t expect or go looking for problems from the start. I’ve been on mtx for 25 years and am fine with it. Yes I had side effects at the start but as can happen they diminished after a while.
I take mine on a Monday in the evening. It can take up to 12 weeks to work so be patient 😊 I would imagine most people don’t get sick with it, you have to remember that people that are here are usually here because they are looking for answers, those doing well are, as AC says off getting on with their lives.
my rheumatologist advised to take it on a Friday night (given that I didn’t work at weekends). It had unpleasant side effects (loose bowels) but did control my RA. Hope you benefit
I’ve been on methotrexate for 12 years. I’m now on 10mgs injection, which I take on a Monday night plus 6 days folic acid. I get the occasional queasiness and fatigue but I try to go out to take my mind off it. Most times I have no symptoms at all.
Good luck there are many who don’t have any side affects at all, you may be one of them x
i was on tablets for years but could only take one specific brand. The rest used to upset my stomach, to the point of feeling physically nauseous. Got to the point of not being able to get that specific brand. Told the rheumy dept of problem. The nurse saw me and put me on the injections. Brilliant, no side effects at all as they don't go through my stomach. Good luck.
I’ve had the same problem, told 4/5 weeks ago by Rheumy nurse that she would put the prescription for the metoject in the post, but never received it. I’ve been trying to get in touch with them via telephone, but no luck. Called my GP on Friday and spoke to the Pharmacist who confirmed they had a letter from Rheumatology to take over the prescribing after the initial prescription. She decided to prescribe the injections so I pick them up on Tuesday, I start on 10mg with Folic Acid every day except the day I take MTX, I could have been taking this for the last 4/5 weeks, but there seems to have been some sort of problem with them sending me the prescription direct.
Still not heard from the Rheumy nurse.
I was previously on the tablets but couldn’t tolerate them, very bad nausea and stomach problems so was switched to the injections, had to stop in 2019 due to virus and advised not to go back on it due to Covid, been waiting ever since to be reinstated, now my hands and feet are much worse and pain. I did have headaches now and then and I was losing my hair for a while.
Hope you will get them soon, good luck, if you can’t tolerate the tablets as for the injections, much kinder on your system.
When I first started MTX 13 years ago my Consultant recommended I took my 15mg dose with my main meals, so I divided it in 3. Folic acid was prescribed for just the day after, increased to the day before as well when I noticed some thinning of my hair. I’ve injected for 12 years at various doses, currently 17.5mg. When I returned to the UK the Rheumy told me she chose to have all her MTX patients on 6 folic acid weekly so that's what I remain on.
I don't know because I didn’t try taking all 6 tablets at once but I'm pretty sure dividing the dose throughout the day with my meals went someway to me doing well on tablets. Nowadays I inject on Wednesday mornings & am fine, just a little more tired & less appetite the day after so just graze & don't arrange anything of any importance on Thursdays if I can help it. It wasn't my choice to change to injections but a new Consultant when he increased my dose thought it preferable.
I agree with AC, please don't suppose you'll feel awful on MTX, not everyone does, but it's on forums such as ours where people reach out when all's not well, rarely to report they are doing fine, so may seem so. Also, MTX is the most often prescribed DMARD so it's bound to be amongst the most discussed meds. It's used as an anchor med for many biologics too, showing greater tolerability, safety, efficacy & effectiveness than any of the other DMARDs, according to a PubMed article.
MTX has certainly been the best of the 4 DMARDs I’ve tried (double therapy with 2), my hope is for you to respond & do well on it too. If you look under the heading Related Posts (top right on my iPad) you'll find more posts on starting MTX.
I take my MTX (20mg = 8 tablets) split with 4 at breakfast and 4 at teatime. I take it the last day of work as, if I feel a bit lousy (not very often) it’s usually the day after. If you choose to split the dose you must take it on the same day - that is vitally important!
You should be prescribed at least 1 days worth of folic acid as well - this is not taken on the same day. I had I dose of folic a week (taken 2 days after my MTX) and then this was upped to 3 X a week and currently I’m on 5X week.
Drink loads of water throughout the week to keep well hydrated which can help.
Be aware of sun sensitivity as you will burn easier (obviously not an issue in GB right now 🤣).
I’m back on Mtx after many years off it. I’m only on a low dose of 7.5 but I feel better than I have done for years. I inject mine on a Tuesday night and to start with Wednesday was a no go was very tired, very confused and a bit nauseous. I’ve found although I was told to take folic acid every day except for injection day, the folic acid seems to disagree with me so I’m only taking it 1 or 2 times a week with my rheumys consent. The side effects have lessened over the last 12 weeks so give it a try and hopefully you won’t look back.
Thank you all so much for your advice. I am optimistic about it working but I just didn't want to set myself up to fail if there are simple things you can do to help avoid or lessen common side effects. I like the idea of taking later in the day and in the first instance having an 'easy' next day. I hadn't thought about splitting the pills across mealtimes on the dosing day. I think that I've been prescribed a single folic acid pill, I'll see how that goes but ask for more if it doesn't seem enough. I must say I'm looking forward to feeling better and hope that by Christmas I'll start to see an improvement.
I have been on it for 4 years, started at 20mg, but had to go down to 10mg as my liver tests were up. That worked fine for me for a couple of years, no sickness, but did feel slightly fatigued and my hair did thin out for a while. Now my condition has worsened I’m back on 20mg and also Sulphasalazine. I do get very fatigued now and have had to reduce my working week, plus the old brain fog, but it’s something I have learnt to live with.
I take mine on a Friday, first thing, with a glass of Kefir and I take folic acid 3 times a week, which I think has helped with my hair.
Good luck, I hope it works for you, it certainly has for me.
😊 x
I take mine in the evening with a ‘proper’ meal. If you only have a light one you can feel nauseous. I would also ask for an antiemetic; I take mine an hour before my Mtx. I also went from folic acid once a week to 6 times (not Mtx day).
It can take 3 months for it to work, you will (should!) be monitored in this time, and then an increase in dose will be prescribed if needed. Don’t expect miracles, patience is the key x
Well I'm just about to take my first dose. I decided to take it on Thursday after tea as I don't work on Friday. Hopefully it won't wipe out my day but at least I won't have to work if I don't feel my best. I have also been given 6 day/week supply of folic acid which I actually started 2 days ago thinking that it may give me a head start on the MTX. On another positive note, I had a review appointment with the consultant come through today for a month after I start treatment. I've also had my bloodwork forms through so it looks like I'm being looked after. What I am now unsure of is whether the GP prescribes the MTX from now or the hospital. If it's the GP, the consultant has put 15mg on the letter to them but I'm going up to 20 mg in 2 weeks so that needs to be corrected as I'm sure the GP won't prescribe 20 mg on my say so.
You'll probably find that the rheumy prescribes it until you're stable and then it may switch to your GP under a shared care agreement. That happened with my Hydroxychloroquin and initially with my Methotrexate when I was on tablets. However, when I changed to injections and when Sulphasalzine was added, those continued to be prescribed by the rheumy as, in my health authority, GPs can't/ won't prescribe those. I wouldn't think about that if I were you, just take the medication and wait for them to tell you about the next stage when it happens. Hopefully you'll be fine on it and it will have a good effect quickly. It sounds like you're being well looked after so try to relax and go with the flow.
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