Hello everyone and thanks for running such a wonderful support group 😊! I am an Aussie but find that this is the best online help that I have found.
I was diagnosed with inflammatory arthritis at the start of the year and have been on MTX ever since but I can’t seem to get away from the nausea it causes. I feel like I am constantly suffering from morning sickness (all day). It’s relentless. I take folic acid every morning even MTX day but nothing helps. I’m on MTX injections as I have always had a sensitive stomach and figured that they would be better but I am at my wits end. I’m almost ready to go back to tolerating the joint pain over this.
I have tried more food, less food, restricting dairy , more dairy, etc, etc. I eat a good healthy diet - little processed food and lots of fruit and veggies plus protein as well at most meals.
please help! I’m ready to chuck the MTX in the bin and go back to hobbling. At least I didn’t feel as though I was going to throw up all the time. Oh - I’m also a teacher so I deal with teenagers all day too 😳
Written by
Jungle5000
To view profiles and participate in discussions please or .
That sounds so stressful, and you've already done so much to try to mitigate the nausea. Is there a possibility to go back to your rheumatologist to discuss this and see if there are any alternatives you could try? It might even be possible to try a reduced dose of the MTX and add something else in alongside - often sulfasalazine, hydroxychloroquine and leflunomide are considered as first-line options for inflammatory arthritis so hopefully there is something that would be suitable and offer you a better cost/benefit balance. Wishing you all the best, it can be a very tricky balance to find, especially in the early days with IA.
Yes, I think that’s what I need to do. I sent the rheumatologist an email as he is hard to book an appointment with but very approachable! I’m sure that I can sort something out but needed to have some ideas from the experts here.
Fingers crossed he can get you into an appointment soon to discuss further. It definitely sounds like you've tried everything you possibly can, so a change in medication could be the way forward. Please let us know how you go!
Good morning, I've had inflammatory arthritis since 1990s the only medication that has calmed down the Inflammation is prednisolone I think it's the best drug to quickly bring down the inflammation so you can live with less pain. You need to see a rheumatoligist to discuss your options. I'm allergic to so many drugs which cause horrible side effects it I m ok on prednisolone normally.hope you get sorted soon I feel for you.xx
Go back to your doctors and tell ‘em about it. I had that foul nausea and other side effects from MTX for four years (tablets and injections) and finally rebelled. Got my sanity back after I stopped it and went onto something else which I now can’t remember as it was years ago. There’s loads of drugs out there now which are much more targeted and cause fewer, if any, side effects these days.
MTX is first line, go-to, cheap therapy for RA and works for many but when it doesn’t and the side effects are worse than the initial problem it’s time to change. You don’t have to accept something that doesn’t suit you and it’s your body that has to suffer the consequences of it so please do yourself a favour and have that discussion. Very best of luck and you’ll find something that suits you eventually though sometimes it’s a slow old process.
You did remarkably well lasting for 4 years - I think that I would do myself in before then. It is just exhausting! Thanks for your support and for sharing your story too. I’ll go back and see. I’d really rather be on paracetamol than this.
Thanks springcross - I certainly understand where you are coming from but I’m reluctant to take a second drug to stop a side effect from a first drug. I would prefer to swap out the MTX and am hoping for advice as to what might be a better option.
Hi,I have been on methotrexate and nothing else except folic acid for the last two and a half years for GCA/LVV.For the first 6 or so months I had no MTX side effects before they kicked in.The worst ones were fatigue and like you very bad nausea.I read through the alternatives but they all had similar or worse side effects.I take mine in tablet form and used to take it straight after breakfast around 8.00am.12 months ago just by chance I had an early morning blood test and thought I will take it when I get back.The later time was remarkable and I instantly lost the nausea feeling.I have continued doing this taking it between 10.30 and 11.00am .I did wonder if the drug didn’t sit well with milk or fresh orange juice I have at breakfast but by changing my time it has made such a difference.I have other side effects but was so glad to loose the nauseous feeling.
Thanks for taking the time to reply! That’s really interesting about the time isn’t it. I take my shot at 5.30 pm on a Monday evening as find that it stings for a bit and it’s generally a time where I am able to be alone before the evening mayhem hits at home. Having said that it is now 6.50’pm on Friday evening and I still feel ready to be ill and I haven’t even had a drink! Oh well….
Morning jungle,I was exactly the same as you on methotrexate Injections, nausea, headaches, literally felt like that at least 4 days a week until I couldn't cope with it anymore.
I lasted just under a year and my consultant took me of it, the thought of it turns my stomach.
I'm now on Adalimumab (imraldi) a biologic. I've had zero side effects been on it nearly a year, I still have mini flaire ups, and bad days, but I can still function.
I could barley move off bed some days (don't no how you coped with teenagers) I hope they change it for you, good luck x
Yes, this is what I am hoping. Maybe a biologic. If not one of the other first line drugs perhaps?? Not sure how difficult it is to get put onto a biologic in Australia.
I’m very pleased to hear that you are travelling so well now - I hope that continues for you indefinitely 🥰.
I too am in Australia.. when first diagnosed I couldn’t walk, cut up food, hardly eat. My Rheumatologist started me on mtx with hydroxy
and then after the 6 months was up straight onto a Biologic. It is not difficult to obtain a Biologic here, but they have to wait 6 months to apply for one and have to assess that the cheaper alternative of mtx was not working because of government regulations.(Cost!)The Biologic was a great outcome for me alongside of low dose mtx. So tell your Rheumatologist that the Mtx is Not working or an option for you.
Wishing you well and hoping you get a better outcome.
Thanks for adding this information for me. It certainly sounds as though you were a lot less well than me. I’m not sure that wellness wise I’d qualify for a biological but I’m certainly not tolerating this MTX. I’m fortunate in that I do have a wonderful rheumatologist who is very approachable and not at all scary like some seem to report. I will ring his rooms first thing tomorrow and see what can be arranged. I know that I will be in tears before I begin speaking so he will know something is up😢
I really feel for you, I was diagnosed 14 years ago and there are still places I can't visit because of how bad I felt. In my case the nausea lessened a bit as time went on and each time the dose was lowered I felt better. My son in law has MXT injections because of the nausea, maybe that is a solution for you?. I am on Benepali and a low dose MXT.
MTX didn't make me sick but it felt like being set on fire and my hair fell out in clumps. It was stopped straightaway and I then was prescribed LEF. That changed my life after initial side effects the RA just disappeared. Not cured but in remission for years. It doesn't suit everyone but there are other medications to try. It was stopped because of an AKI which was unrelated and then AZA just as good. So my advice would be go back to Consultant and say had enough please can I change. Good luck x
You have given it your best shot so tell your GP, and your Rheumatologist that it is not for you. I have had RA for over 40 years. I could not tolerate MX so was given alternatives. I do have deformed hands and feet, and possibly the deformity would have been less if I had taken it. All RA meds have side effects but hopefully you will try one you can tolerate more. What suits one person might not suit another.
I stuck with MTX for 10 years somehow. But I had to stop eventually as my mental health was taking a dive. Ditched the tabs and then the Metoject pens and switched to sulfasalazine.
Upset guts for a couple of weeks but fine after that - no nausea at all. Only now, after 6 years, have I had to try infusions as they're no longer effective on their own.
I was awful on MTX pills and injection but keep speaking to your RA team as there are many more medication’s available. It took me 5 before I found the one I could tolerate so I had to keep getting back on the horse even when my head screamed NO!
As everyone else has mentioned it’s definitely worth contacting your rheumatology team to ask for a medication review, there are plenty of other options. In the meantime look at the medication page on the NRAS website so you have some information about what the options are when you get to speak to them.
Thanks everyone for your overnight responses! Yes, it’s clear that I have to go back and see the rheumatologist 😳. He is just lovely and will no doubt be horrified that I have left it this long without saying anything. I am beyond grateful to you all for your advice and support with this matter - thanks for taking the time and effort to respond. I am not sure what the situation is here in Australia re changing meds but I guess I will find out. Thankfully I don’t have to deal with insurance companies like in the US as it is more like the NHS here 😊.
It’s a beautiful spring day here - something to be grateful for!
I’m in the same boat. So I send lots of empathy.! Three years of it. It means I live a very very limited life & will sometimes actually miss an injection because I can’t bear it anymore. I’ve spoken to the consultant many times but he ignores me — I’m in the process of changing consultants as I’m so unhappy with the care I’m getting. Anyway, I’m watching this conversation with interest. I feel your pain, I really do.
I sympathise! When I was first diagnosed 14 years ago I was put on mtx, sulphasalazine and hydroxychloriquine triple therapy. After about 9 months I stopped taking the mtx because of how rubbish it made me feel. I did ok on the other two for several years until the sulpha started affecting my white cell count. After a short time on leflunomide which didn’t really work apart from causing me to lose a lot of weight! I was put forward for a biologic. It has made a tremendous difference. It is usually recommended to take mtx with a biologic but my consultant told me he had selected tocilizumab because it was one of the better ones to take without mtx. Do speak to your rheumy, as lots on here have said, there are several alternatives. Hope you get sorted soon.
When I was younger I couldn’t tolerate the mtx because of the nausea it caused me, even with an antiemetic. I was switched to leflunomide which I found much better. I didn’t have any side effect from it at all but obviously we are all different. I hope your rheumatologist gets back to you soon.
I would definitely go back to your rheumy to discuss. As someone else has said, there are many more medications these days to try. Good luck on your journey.
Hi, so sorry you've been feeling unwell. Constant nausea can really drag you down. I haven't time to read everyones replies so maybe someone has already made this suggestion? A few years ago my friend was going through chemo and it made her very sick. There had been a radio 4 program about the benefits of real lemon lemonade for quelling nausea because of its affect on the stomach. So I bought her some and she found the results amazing. So I kept her supplied. When I was carrying my three children I had hyperemisis very severely but didn't want to risk anti nausea drugs. So I tried a few different things - I didn't know about lemonade back then - such as: nibbling on arrowroot or ginger biscuits; sucking crystalised ginger; mint/ ginger tea; small regular meals/snacks; flat cola ; ice ; mints. By giving stomach acid something small and plain to work on it helped it to settle. I think the real lemon juice lemonade helps to change the stomach acid. You could also try asking for some anti nausea medication. Your pharmacy might even be able to recommend a travel sickness tablet.
Thanks Rachel for taking the time to respond! Yes - I have been living on lemonade and gum as they are the two things that help me with the nausea. 🤢 what a great life!!
Welcome to this lovely and supportive group. I totally understand the issues with MTX as I was on it for 8 months at the start of last year. It made me really nauseous as well and I felt like had a bad hangover feeling most days! I went back to the rheumatologist who put me on hydroxychloroquine and Leflunomide, which has been great, no side effects at all and it seems to be working 🤞🏻🤞🏻🤞🏻. Working as a teacher must be stressful too, so it sounds like you might need another medication. MTX works really well for many people and gives them a good quality of life. My hubby is on it for psoriatic arthritis and has been on it for many years. Hope you are able to sort this out with your rheumatologist soon. By the way, I used to live in Australia (Brisbane)
I have total empathy. I am in the same predicament as you. I have been on mtx injections and sulfasalazine since 2018.. nausea and brain fog all day the next day, but only one day luckily. It must be awful to have it everyday .I have missed a jab occasionally just for a break from it. I was also a teacher before retiring sp I take my hat of to you .I have discussed swapping to another drug with my rheumy but mtx has me in remission and I not keen to rock the boat. I also take other meds for other reasons and so everything may be upset by a change.!
Maybe you could ask for an anti dickness tablet ? I have tried several over the years and some help a bit. Lots of fluids all day before and the day after , a carbohydrate high meal before my injection, and injecting in the evening soon after my meal help a bit.
I too may ask to change drugs as the thought of feeling sick even one day a week forever isnt appealing .
Sorry forvthe long post , meant to be supportive and wish you all the best and hope you get sorted soon. 😊
Most people take methotrexate without problems, but some do really have difficulties. Sounds like you're one, as I was. I had great problems persuading the rheumatologist to do anything about it, although they did change me to the injections saying that would sort it out. It was only when the dentist insisted that I should find an alternative - and was prepared to put it into writing did they listen. Unfortunately I also I had problems with some of the alternatives (allergic reaction to sulphasalazine & hydro, blood pressure problems with leflunamide) but I've been on azathioprine (which is cheap) without problems.
I totally understand your frustration, especially as it sounds like the methotrexate has helped with your inflammation. However, there are many other options for you to try and many DMARDs to choose from. Methotrexate is generally the first choice for rheumatologists maybe due to their low cost.
Although all DMARDS have side effects if you read about them in the National Library of Medicine, it states
Although most conventional DMARDs have similar adverse effects, there are several adverse effects unique to each agent. Hydroxychloroquine, is unique in this respect as it has the best safety profile out of all the conventional DMARDs
I would request an urgent appointment with your rheumatologist to discuss alternatives and state that you have read the above information. Go armed with your concerns and what you want out of the appointment.
It sounds like you are on it regarding lifestyle choices and diet. I take complementary meds now, too. Since 2017 I've used doTerra Life Long Vitality, which has helped considerably and been effective alongside the prednisolone and etanercept biologic. It contains a tummy tamer, but I now also use doTerra Zengest capsules for my stomach instead of lansoprazole.
I hope you get sorted and find the meds that suit you so you can have little inflammation and no nausea.
Just a brief comment as most of it has already been said.I too struggled with MTX for years, constant feelings of sickness and also other digestive problems, I had tried all the other Dmards.
My Rheumy moved me onto a biologic, took a while to find the one that worked with no adverse side effects but Cymzia did it and has been keeping me well for nearly 3 years now without any other medication.
That is my story - don't give up just ask your Rheumy.
Hey Jungle5000. I’m now 53. I’ve had RA since my 20’s. I’ve been having Infliximab infusions every 6 weeks at my local hospital for the past 20yrs. At the beginning. When i was first diagnosed. I was on loads of meds. Seriously strong meds. Plus steroids. I felt like a 90yr old when my life was just starting. My then husband became my carer. Literally overnight! It was an awful time. I had 2 walking sticks. He had to help me to the bathroom. The pain was excrutiating. Plus i felt sick. Constantly. The first 3/4 months especially. Plus the fatigue. It really was an awful time. I was told i would feel the nausea for quite a while. Just until my body got used to the meds. Here’s a tip:
I found mint eased my stomach. Sugarfree gum? Or maybe try peppermint tea? That can ease the symptoms. Do you use omeprazole? Or maybe Rennie tablets? Maybe they can be a stop gap until you see your rheumatologist. I’m sure you can all find a compromise. Good luck. X
I can completely sympathise with you! I was exactly the same when I was on it. It was horrendous. It also made me depressed.
I ended up coming off it because I saw the rheumatologist and it wasn’t working and I wound up in hospital with heart issues. Please go and see you rheumatologist and make your case! But be aware they have to leave it 6-9 months to prove it’s not working to move you on to biologics. Because they have to prove it doesn’t work to apply for funding.
But although I’m now on biologics and am so much more well than I have been, I’m still trying to find the magic formula to make me fully well. It’s a long road.
Hi Tealblue2 - thanks for that information. But really- 6 to 9 months? Arghhh! I think that I have only done 5 🤢. Can I just pretend to take them for the final month? YES. It is playing havoc with my mental health too. Quite depressed but is that any surprise?? Thanks for letting me know that I am not alone 💗
I phoned the nras helpline in desperation and they were full of really helpful information. I would suggest anyone in the same situation does the same - well worth it.
hi I too had problems with severe nausea both with tablet form & injections of methotrexate. As it was 27 years ago there weren’t any alternatives for me so like you I persevered & soldiered on teaching & raising a family. It was grim but now there are so many alternatives out there you really need to advocate for yourself & your non existent quality of life & the fact that you have such a lot to give via your teaching. Before I eventually managed to get on to a variety of biological therapies prednisolone orally & injections helped keep me mobile & helped with the pain & stiffness. I have finally found the magic potion for me in the form of Jak inhibitors. They have been amazing..no side effects & a once a day tablet. It’s really trial & error to find what works for you. But if you are prepared to keep taking this medication they will be happy as it’s the first line & cheapest option. It can work well for some people but I found it’s actually given me long term liver damage. So don’t persevere with the nausea as it can cause you problems in the future. Good luck with your journey. All meds have a list of possible side effects so you just have to keep trying until you find one that works for you. Took me 25years! But there weren’t many options back in 1997!
The new JAK inhibitors sound really interesting. I don’t know if you have to try a biological before you can try these?? I guess another question for my rheumatologist! I hope that they continue to work a treat for you and I do like the sound of a tablet rather than another injection or infusion 😊. I did not think that it would worry me but I am surprised by the fact that it kind of does 🤢
are you sure you have to take folic acid every day? I was on methotrexate for 30 years but only had to take folic acid once a week. Please check with your doctor. I came off methotrexate because of awful headaches. There are so many other drugs and biologics you can use. Don’t give up. I got it at age 25 and am.now 79 and still enjoying life. Good luck
I started on one a week and it was increased to six days (not on Methotrexate day) to help with side effects which is pretty common here in the UK. In the USA they do take it every day. Great to hear that you've coped successfully with RA for so long 😁
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Mtx and Nausea
Have I made the wrong decision?
Am I being silly???
Methotrexate Struggles
Am i being stubborn?!?
