Methotrexate and nausea

[Fluffontoast]

Sorry if I've asked this before, but everyone I've heard of or asked, who is on the oral Methotrexate seems to get nausea. How long does it last e.g 1 or 2 days? Or constantly? Does it go away after some weeks or months? It's really putting me off.

[Runrig01]

I’ve been on it 7.5yr, and have never had any side effects, except for a slight thinning of my hair, which was very thick anyway. Forums like this don’t give you a true reflection, as those not having issues, are generally getting on with their life’s and not using forums. It has done wonders for my peripheral joints

[Fluffontoast in reply to Runrig01]

Thanks

[Amnesiac3637]

Have to say I couldn’t tolerate it, hated the nausea, brain fog, generally feeling hideous for four days out of seven but others have happy experiences and swear by it so it's very subjective as to how you react to it. Whatever, if you can’t put up with the side effects it’s not compulsory to stay on it!

If you’re not yet on it and worrying about nausea, it may not affect you at all and it’s still a good drug as a starter so worth giving it a go. If you’re already on it and suffering too much have a word with your rheumatologist and get MtX changed to something else.

Best of luck, hope you get sorted out with the right one!

[Fluffontoast in reply to Amnesiac3637]

Thanks I'll most probably give it a go

[Sebastian247 in reply to Amnesiac3637]

I was wondering what happened when you couldn't tolerate it? Have you been switched to something else? Were rheumatology supportive of you changing?I did have nausea but more folic acid stopped that, however other side effects are making life intolerable.

I wondered if your rheumatologist was supportive of you trying something else. Mine isn't currently and says the symptoms I am experiencing like brain fog, chronic fatigue aren't side effects from mtx.

[Amnesiac3637 in reply to Sebastian247]

Hi. I was on Methotrexate about 25 years ago and tried it for four miserable years with the side effects I described. Despite being changed from the tablets to injections and having folic acid added in I felt so ill I eventually decided enough was enough and talked to my rheumatologist about changing to another drug.

He was (and still is as I still have the same one), entirely sympathetic and I progressed through all the Dmards, onto biologics and finally, now, on a JAK 30 years later. A lot of rheumatologists seem to stick with the old tried and trusted drugs which have served well for some but if you can’t tolerate MTX then it’s not compulsory to stay on it and you have every right to challenge and change. It’s your body.

The consultants are the experts in the management of the disease but they don’t live with the consequences of their prescribing; we do and sometimes we can’t so have the conversation. There’s so many, newer and more targeted drugs out there and you should be able to move on to another until you find the best fit for you. Best of luck.

[Sebastian247 in reply to Amnesiac3637]

Thanks. Appreciate you sharing your experiences. My rheumatologist hasnt been so understanding. So I've seen my gp and she's writing to rheumatology on my behalf.

Best wishes. Seb.

[Thingybob]

I had the nausea etc on the tablet form. I moved quickly to the injections. I still get after effects the day after but not as bad . I persevere with it as it seems to.work for my RA. You could ask your rheuny about changing to the injections ? Best wishes :).

[Fluffontoast in reply to Thingybob]

I'll probably try this first and give it a few weeks. I've mostly heard that the injections don't lead to so much nausea, so that's plan b!

[Neonkittie17 in reply to Fluffontoast]

Was about to say I switched to sub cut Mtx to try ensure a better result for my RA (it did!) the slight nausea I had before disappeared. Hope you can speak to your thumb re sub-cut Mtx.

[Fluffontoast in reply to Thingybob]

Btw are you a moomins fan?

[KittyJ]

I’ve been on it 25+ years and I don’t get nausea, I did at first and take folic acid so I no longer get it. It’s not a given you will get nausea but you won’t know if it’s the drug for you unless you try.

[Boxerlady]

I didn't have any nausea when I was on tablets, just tiredness about 24 hours after taking it. I moved onto injections to get a higher dose and have the same side effect; I find it perfectly manageable, though.I'd suggest that it's worth a try as it might be "the one" 😁 If it doesn't suit you, you can always move on but if you don't try it, you'll never know! I'm actually rather pleased that I didn't know anything about it beforehand - or any of the medications I'm on - because I had no expectations of problems and that can be very helpful. Try to be as positive and optimistic as you 😉

[Fluffontoast in reply to Boxerlady]

Ok, will do, thanks for that!

[Madmusiclover]

no nausea but didn’t feel great on 20mg. Currently on 10. No issues apart from tired the morning after.

[Fluffontoast in reply to Madmusiclover]

Interesting! They are starting me on 15mg, seems a bit high. I might query it.

[Cat-E in reply to Fluffontoast]

I think 15 is the normal starting point, I've gone from there to 17.5mg. I did feel a bit sick for the first few months the for a day or 2 after the MTX and had awful diarrhea but increasing the folic acid to 3x a week sorted that and now 6 months on I dont have tummy troubles

[KittyJ in reply to Fluffontoast]

15 isn’t high, I started on that and I think it’s very common to and then increase it, 25 is the top dose I think for us.

[Madmusiclover in reply to Fluffontoast]

Should add the methotrexate is supplementary to my main drug Upadacitinib. But yes, when I took metho the first time as mono therapy they started me on 10

[AgedCrone]

No 1 rule is Don,’t listen towhat other people experience !

The problem with Mtx is that the people who take it quite happily for years getting good relief with no side effects …don’t often write in saying so.

So that ends up that the overall impression the newly diagnosed get is that Mtx is the drug from hell.

Well listen up it is NOT for everyone. I took it very sucessfully for 7 years with no nausea or any other nasties at all. …& I was very upset when overnight it just stopped working.

So if you have been offered it…grab it . Yes some people have nausea & other side effects…but a lot of other DMards have really nasty effects very often too.

I am convinced side effects on any Dmard can be caused by anxiety…& the “what if,I get that ” syndrome!

Good Luck with whatever Dmard you end up on..

[vonniesims]

Are you on Folic acid 6 days a week too?This seems to be standard for most people to help manage side effects so ask about that too. Hope it settles

[Fluffontoast in reply to vonniesims]

They have prescribed 1 a day

[vonniesims in reply to Fluffontoast]

A lot of us are one a day except for Methotrexate day so may be worth asking if you can do that too

[sylvi]

I have never had any side effects from mtx ever though i know a lot do. Hugs. xxxx

[Nanainthegarden]

I have been on oral mtx for 20+ years. In the early days I did have nausea the day after but now? Nothing! As someone else has said, you can but try it.

[toothfairy2]

I have avoided oral methotrexate for two reasons...nausea and injection is much more effective and no side effects.

[gilox]

I had this for several years nausea ,no energy etc, then put on weekly injections, the difference was amazing, but do feel a bit “down” on injection day.

[Gymcactus]

I felt nauseous the day after but since taking it after main meal and with full glass of water I no longer get any side effects. Been on methotrexate for 7 yrs and sulfasalozine 6.

[Brushwork]

I really don’t think there’s a definitive answer to your question. Amongst us we have had a variety of reactions to this and most drugs available.

Some people do really well on Methotrexate and tolerate it really well, others have slight short lived nausea, among other side affects, while others really can’t cope with the side affects.

It is, as with all of the drugs available to us, trial and error.

I urge you to be brave and try, it’s such a relief when you find the one that works. At the same time, be prepared to say no, if it isn’t for you.

Good luck

[Honeybee61]

I was on methotrexate tablets for 13 years with no problems, suddenly I couldn't even look at the bottle without feeling nauseous. Very strange. Injections much better for me (although not so keen on the new pen!)

[SueBaker]

I've been on oral MTX for around 12 years now and never had any side effects at all. I'm a huge fan of the drug! It really changed my life

[Mostmoses]

Methotrexate made me very ill, as did hydroxychloroquine. Some people can’t tolerate DMARDS, but many do well on them.

[Maeve31]

I've been on Methotrexate for 20 years and am on 25mg per week. Thankfully my experience has been terrific so I generally don't post that as it seems a bit insensitive to people who are having a rough time.

I take it in the middle of my morning porridge and that thankfully really works for me. If I'm away and don't have porridge, I'll spend the day burping and not feeling great. So I'm very lucky to have found what suits me and I keep my fingers crossed my luck will continue !

[Fluffontoast in reply to Maeve31]

I love porridge so maybe that's the answer!

[Maeve31 in reply to Fluffontoast]

Worth a try! Best of luck with it

[Fluffontoast]

Thanks for all the helpful responses everyone

[Sebastian247]

I take 20mg orally, after being started on 15mg which wasnt a high enough dose to work. For the last two years I've had no RA or flares. I did experience nausea so increased folic acid to 6 tablets a week which stopped it.

Alas over the last year I've felt increasingly unwell with severe brain fog, chronic tiredness and dizziness and just generally very yuk. It's become so bad it's effecting my quality of life and ability to work.

I've had no luck to date convincing rheumatology it's the MTX making me feel unwell and they diagnosed fibromyalgia instead.

So I stopped taking it for a month and the side effects stopped and I felt so much better. The symptoms came back after I restarted taking it.

I've since seen a gp who has dismissed the fibromyalgia diagnosis and written to rheumatology to try and persuade them to let me try something else or at least lower the dose to see if that helps.

It's frustrating because mtx has worked so well on stopping my RA. Some people do very well on it so It's definitely worth trying and persevering. But like me it seems it doesn't suit everyone.

Best wishes.

[Fluffontoast in reply to Sebastian247]

I hope you manage to get a med that works for you.

[KASHMIRI1]

I take oral methotrexate and have nausea from time to time. It doesn't seem to happen every week for some reason. When it does it lasts on and of for a couple of days. I take anti nausea meds when it gets going.

[rmros]

I was worried about taking it too until I got talking to the owner of an Airbnb I was staying at. She was on it and said she had no side effects at all.

So I agreed to try it. I get mild nausea for a day or two - it comes in short waves and isn't bad enough to stop me doing anything. I find methotrexate much easier to tolerate than sulfasalazine and works better.

[Fluffontoast in reply to rmros]

Ah, OK, thanks

[Nyreedw]

I've been on 25mg mtx for 27 years and never had any problems. Only med out of the ones I've had that made me feel ill was pred I was given when I had Bells Palsy. Never had it for RA, it was horrendous and no help to my BP. x

[suwinter]

Hi Fluff, I’ve been on methotrexate for over 20 years and have never had nausea. The only side effect I’ve had are slightly elevated liver readings, but these have been static for many years. Hope that helps 😆

[Fluffontoast in reply to suwinter]

Thanks!

[Fluffontoast in reply to suwinter]

Su, do you take it in evening and is it oral? Do you have folic acid?

[suwinter]

Hi, yes I take it weekly in the evening. I take 5mg folic acid on the other 6 days.

[Tia53]

I've been on MTX injections since Dec 2018 (10mg). I used to inject my thigh, but after a couple of years, it started to hurt a lot when injecting, so now inject my stomach. I get nausea occasionally the next day and sometimes the day after, but then go a couple of weeks with no symptoms. There's no pattern with me! But I'm used to it now 😊