Hi everyone
I am new to this site but I am hoping for some help, I am due to take my second dose of Methotrexate and feeling very worried about taking it. After taking the first dose I have felt unwell all week and am concerned it will be the same again for the next week. I know everyone is different but roughly how long do the side effects last for.
Thank you
Welcome to our group!
Hopefully you'll find that the side effects settle as your body gets used to it; I find that now I just get a fuzzy head (Methotrexate hangover!) the next day so take it on a Saturday and have a nice quiet Sunday. It helps if you drink lots of water the day before and on the day. In what way have you felt unwell?
Are you on Folic Acid? I was originally on one dose a week but it was increased to six days a week (not on Methotrexate day) which definitely helped with the side effects.
Some people find that injections cause less problems than tablets but it's usual to try the tablets for a while first to see if things settle.
Hopefully you've got a review with your rheumy team soon; if not, it might be worth ringing the nurse advice line to let them know.
Thank you, I am on folic acid but only I tablet the day after. I can really explain how I feel apart from really yuck, and that my stomach feels like it doesn't belong to me anymore. I have decided to take the next dose tomorrow and hope that the effects don't last as long I also reduce the steriods tomorrow so hopefully that might help as well.
I did have some tummy issues in the early days but thankfully they settled.As I mentioned, keeping well-hydrated can help. For nausea, my go-tos are ginger and peppermint and also eating little and often - preferably before I actually feel hungry, even just a piece of toast, banana or a biscuit.
I felt yuk too. It’s hard to describe isn’t it? I wasn’t on it for long as it didn’t suit. Probably about 6 weeks. Others have good advice on here, but ultimately it doesn’t suit everyone. Don’t suffer in silence.
Good morning thanks for your reply, how did you know that the tablets didn't suit you, I think that is one of the things that worries me most, I'm not sure if what I'm feeling are normal side effects or if the tablets are not right for me, sadly I don't go back to the hospital for 3 months so I feel like I am totally on my own trying to work out the best way to manage.
I felt fuzzy headed and tearful. My tummy wasn’t really an issue. You can ring the helpline before three months and say you are not feeling well on them. All I could really say to them was I ‘feel awful’. It wasn’t very specific but I did sob rather loudly down the phone! . The minute I stopped the old me came back. There are many other drugs to try. They can’t see you struggling so you have to tell them.
It took a few months for me to get used to it. But eventually ok, and it’s been good for me for 11 years now.
Drink lots of water, and talk to your medical team about increasing folic acid.
Thank you for your help
Welcome to the madhouse!🤪I get a lot of support and advice on here (not medical advice, as we are not able to offer that) - I would be lost without these guys 🥰
As for methotrexate, I started on the tablets and moved swiftly onto the injections. We're all different, but it suits me better; my body tolerates it better this way. I also take folic acid 3 days after mtx until the day before mtx - so I take it 4 days a week.
Keep talking to your rheumatologist and clinical nurses; they won't know how you feel unless you tell them. But I agree with the others - it all takes a while to settle. I hope you feel a little better soon - hang in there. The NRAS have a free phone line too - they are fabulous people!
I had horrible side effects for quite a while but it did settle eventually and methotrexate gave me my life back! It takes a while though.Great advice already, but we are all different and react differently and at different speeds.
Folic acid 6 days a week helped me. I also inject and had far fewer side effects.
I do my injection just before bed, and sleep through the worst. Also drink lots.
Good luck, don’t expect instant results but you will feel better and it is wonderful when the RA is under control x
Stick with the MTX, I’ve been taking it for 4 years and it’s controlling my RA, occasions when I’ve had a flare, the dosage has been increased, then reduced again after 6 months. Good luck with your 2nd dose and be kind to yourself.
Indeed, water is the one helping me. 2 l a day or something about. I am still experiencing side effects ( it is almost 1 year since I started it) but it is mainly 1st day after. I inject Fri at 6pm ,start to feel fuzzy at around 9,10 pm but I go to sleep and the worst is gone overnight. I also asked my consultant to reduce the dose as I started with 25mg my blood values were pretty bad last year. I am now on 15mg .Not having any serious flare up during this time I felt I can try to reduce the dose. Was scared a bit right after, thinking I made a mistake ( as my symptoms exacerbated) but after couple of weeks I actually felt better and my body rebalanced and I am fine again. I am also taking Sulfasalazine as Methotrexate itself was not sufficient.
However, Methotrexate was never my friend so who knows I may need to come off it one day.
We are actually some lab mouses. There are so many options available but we have to find the one suitable for ourselves. As you already mentioned we are different and our disease is different from a case to another.
Chin up, you'll find your way, believe in you!
Xxx
Welcome- I’m agreeing with the other replies. I was moved onto injections of MX quite quickly - and have been on them for 10 years now. For some reason I’ve been unable to tolerate any of the oral DMARDS.
But MX has been a good friend and allowed me to lead a (mostly) normal life - although have recently started on a biologic as well
Well hey there welcome are you taking it in the eve coz I take mine late eve really hope you can continue take care
I'm on 25mg mtx injections once a week and take folic acid every day except the day off my injections. I started off on tablets but could not get on with them made me bad all week so asked to change to injections. I also take omeprazone each day to help my tum. Good luck hope it gets sorted.
When I was initially on tablets my pharmacist who was also on them advised me to take them at night after a good dinner with plenty of water and that helped. Mtx is well known for its side effects sometimes they settle down, often they last only 24 hours and you put up with it because the Mtx works well for you and for some it’s just not suitable. Generally I understand it takes three months at least before you know if it’s working for you. I have now been on injections for years and still have a rubbish day after. I have also noticed that if I am in the initial stages of a cold or cystitis it gets much worse starting the day after injection day. May well just be me and I certainly wouldn’t recommend this to anyone else but if I am unwell or on antibiotics I will sometimes miss an injection. I wld always advise contacting your rheumy because if it’s really not for you they will need to find an alternative.
I inject 15 mgs. and sorry to tell you but it took a whole year for me to get over the side effects. Now, I do not get any side effects at all. Folic acid 6 days per week helped a lot particularly with the mouth ulcers that I got. My digestive system really struggled and was the final thing to resolve. However, it has helped my hands and wrists a lot.
Morning. It all adds to the stress when you are feeling unwell. I stuck with Mx and all the horrible things did subside eventually. I think they say 3 months to see how you are/ how your body is adjusting. They then increase the dose in increments, again 3 monthly. I would ask your GP for an antiemetic as that really helped me. Cyclizine an hour before Mx is what I take. Also ask for an IAPTS referral as this is tough stuff.. x
To add to above. Always take your Mx with a ‘proper’ meal, and take it in the evening; never a light one or a snack x
Welcome to the community, we all react differently to our meds, some don't have any reactions/side effects at all. If in doubt speak to your RA nurse but w will do what w can to offer our personal advice and support. Good luck.🐕🐕
Welcome to the club no one wants to join- a bit like Hotel California 💐
I was on MTX for 7 months-oral 15 mg for 5 months and then 20 mg by injection for the last 2. I always had both nausea and headache for 24-36 hours after a dose, but for me these only continued to intensify week after week until I landed in hospital after a massive spike migraine (very scary indeed). Now trying a biologic which I hope will agree with me better. So the message is, as others have said, that each of us is different. Navigating our way thru til we find something that works can be scary, but it’s unfortunately necessary. Don’t try to ignore or minimize how you describe your responses to medication and if things should intensify, talk to your doctor!!
I couldn't take Methotrexate because I have a liver problem so have now been on biologics for about 6 years and it has been absolutely amazing. I get very few problems and wish I couldhave had it 20 years ago when first diagnosed, it would have saved a lot of pain and destroyed joints. Good luck with it!
Another thought is that as you were only diagnosed last week you must still be dealing with getting your head round it so try to take it one day at a time. In the early days, it's difficult to separate what is due to the disease, the thought of the disease, the medications or the thought of the medications. It can feel like a bit of a minefield so be kind to yourself 😊
Dont know if this will help but I was told to take methotrexate in evening ...certainly helped a bit. Takes a while for body to get used to it and adjust
Hi, I was on tablets for a few months and often felt nauseous. They put me on folic acid 6 days a week which helped a bit. A Doctor friend said take the tabs throughout the day rather than all at once - didn't really help. Some weeks I was ok, some weeks not. I thought it was something I had to put up with as it controlled the RA pretty quickly but I mentioned it to the nurse and she immediately said we can change you to the weekly methojet jab, which is great and only occasionally do I feel sick. I would say I was on the tablets for 6 months. You should advise them as they may be willing to change you from the tablets. In the meantime water, ginger, peppermint tea etc as already advised. Good luck.
Thank you for the advice, I have taken the tablets in split dose today to see if that made any difference but no luck 😢, at the moment I haven't got a nurse to contact and have 3 months to go until a hospital appointment, I have booked a doctors appointment but thats not for 2 weeks, not really sure where to go to get any more help.
Hi Elsie, I had stomach problems on the pills but once I started injecting the Methotrexate it didn’t bother me any more. It helped me a great deal. I also took Folic Acid every day with it.
Hi there - lots of good replies here, but thought I would pop in the details of the NRAS Helpline if you want to call and talk about medication, RA, being newly diagnosed or if you just need a friendly listening ear. They are open Monday to Friday 9:30am to 4:30pm on free-phone 0800 298 7650 or you can email any time on helpline@nras.org.uk
As others have said, don't feel you have to suffer in silence and make sure you keep a track of how you are feeling so you can take that to your next appointment. Side effects are very normal, but if they are or become unmanageable, to whatever extent that feels for you, then do make sure you speak to your rheumatology team.
Take care
Kim (NRAS)
Hi Elsie. I just wanted to lend my support and encouragement. I'm newly diagnosed too, and just about to start my first dose of methotrexate this evening.
So I've was very grateful you'd asked the questions that were on my mind and I've also benefitted from reading the supportive messages you received in response.
I'm dreading taking the stuff. But I've been taking Sulfasalazine for 6 months now and it hasn't helped at all, in fact my symptoms have worsened.
I hope you manage ok and things do improve. Best wishes.
Seb.
Others will have covered most of the info, but here's my penny's worth.MTX takes about 3 months to work get into your system properly.
I was put on folic acid each day except MTX day.
Anti sickness meds for days you take MTX & following day can be obtained from RA team or GP.
I take my dose in the evening hour after antisickness meds , & try to sleep through worst of the symptoms.
Hang in hope you soon feel the benefits. 
Hi and welcome! I love all the great info everyone offers on this subject! I've been on methotrexate for about 6 months and yes at first i would feel somewhat crummy the next day, but now have no issues with that. I take a folic acid everyday. How much methotrexate are you on? I'm on 15 mg once a week and so far so good as no more of those unbearable flare ups. wishing everyone good luck with their meds!
Hi, i barely remember what i felt like on it at first (12 years ago) but the second I started injecting it I had pretty much zero side effects (with the exception of my hair falls quite a bit either on tablets or on injection). So my rheumi put me on 5 mg folic acid every day (not just injection day). Sometimes with injection u can take less as it bypasses the digestive system. Injections may sound overwhelming but i found it easy peasy and don’t even think about it. I’ve kept some tablets if travelling in challenging countries. Best wishes!
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