Methotrexate

[Dece]

I've been on MTX for12 years, first pills and now injections but it's making me really nauseous and I just feel that I can't take it anymore. My consultant says it's working so it's best to stick with it and I'm frightened to switch to something else in case RA gets worse. But MXT is making me feel so ill.Anyone else had this problem ?

[AgedCrone]

Are you sure it’s the Methotrexate? Speak to your rheumy nurse & ask if you might skip a jab, or change your dose..on the other hand, I was on it very successfully for 7 years & it just stopped working, so my rheumy swapped me over to a Biologic…& it was the best move ever.

Don’t stay feeling nauseous….talk it through & say firmly enough is enough, & see where you get.

[KittyJ]

yes I was very sick on injections too, have you tried an anti emetic? You could speak to your rheumy about it, if mtx is really working for you it’s worth trying first but it didn’t work for me and I eventually had to stop the injections. If you’ve tried everything to stop feeling nauseous then be firm with your rheumy and tell them how it’s affecting your life, you don’t have to put up with it but do remember if you come off it then it’ll take a while to get other meds and for them to work so always worth persevering if you can while you try to find a solution. Good luck, I hope you get sorted soon.

[vonniesims]

Are you taking Folic Acid?

[Dece in reply to vonniesims]

Hi Vonnie

Yes I am and like everything it helped for a while but not any longer. But thanks and best wishes

[whitedog]

I was the same. Stuck it for 10 years and put up with the nausea but then just started finding it intolerable. I tried the injections but they made it worse. Couldn't even look at the cupboard it was all kept in without feeling ill so I took matters into my own hands and stopped it.

Changed to Sulfasalazine, had upset guts for a couple of weeks but felt fine after that. I don't feel nauseous with it at all - just a little bit of acid reflux now and then but nothing like when I was on MTX. I think there are lots of different options now.

[Dece in reply to whitedog]

Yes I’m the same just thinking about it makes me heave. I’ll be firm and ask for an alternative although I’ve tried in the past with no luck xx

[medway-lady]

I wasn’t sick but my hair fell out in handfuls. It was stopped as it was like being set on fire from the stomach to top of head. I went on LEF which was great. It put the RA into remission for years. There are a lot of meds out there and if your sure it’s the MTX then go back to the RA team I’m never in favour of just stopping something as nearly all drugs have side effects and it is a risk v benefit calculation only a Rhumatologist can make but no harm in asking. I’d suggest keep a diary to show a link and talk to them again.

[Kati66 in reply to medway-lady]

I had awful nausea and lost so much of my hair 😞😞😞. I’m still dealing with the impact of that but so glad I was assertive with the doctor and I’m now on Leflunomide, which touch wood, has given me no side effects 😁😁 xxx

[Hisue]

Mtx affected my mental health (panic, pacing, melancholia) & gave me nausea & diarrhea. Stopped taking it. Now on Rinvoq.

[Navyday22]

Hi Dece sorry to hear that methotrexate is making you ill. I've been on it for about the same time as you and also feel nauseous but I take a tablet called cyclizine to stop the nausea. This was prescribed by the doctor and it does help if you take it half an hour before the methotrexate. Speak to your doctor and good luck.

[smilelines]

I think 12 years on it is a long time and if you are nauseous ask for something else. Are you sure it is the methotrexate? If you are then don't suffer because there are other options. You need to enjoy life and food, too!

[Swanfull]

OMG! can’t believe you have struggled through for 12years Dece. I was on it for 3 years and couldn’t stand it any longer it made me feel so Sick. I spoke to the Rheumatoid nurse and I was put on a Biologic ( Benapali ) they wanted me to stay on the MTX as well but I decided to just try the Biologic on its own. I have never looked back so pleased I changed I feel I have my life back I have the odd flare but hated the MTX it controlled the pain in the beginning and I was a little scared about changing over to another drug but so pleased I did 😊 please, please, go see your Nurse don’t suffer anymore! 🤗

[Dece in reply to Swanfull]

Hi everyoneThanks so much for your replies re MXT it's so good to have the help and support that this community gives. Love to youvall xx

[Aliceeliza]

I've been bothered by nausea, indigestion and heartburn for about 3 years, and been on methotrexate for the same time. Finally went to GP and having excluded sinister causes I am on omeprazole fir 6 weeks to see if it helps. I hate taking mtx but it has worked on joints but no help to tendon pain so going to talk to rheumy nurse tomorrow. Really worried about taking an alternative and suffering again.

[cyberbarn]

I was only on methotrexate for 6 months. It started to work after three and I thought great, we found my drug. But then I started to get gastro symptoms, joints started hurting again and I just felt so crap within myself. I had to stop it for the covid vax and felt so much better in myself that I didn't start it again. Sadly the rheumy has refused to try me on anything else. I do have three doses sitting on the shelf behind me, but I felt so much more awful taking it that I am not tempted to try it again.

[oldtimer2]

I had brain fog, large mouth ulcers, sickness and loose bowels on methotrexate. Some people just don't get on with it. If you have tried extra folic acid, and the injections (so that you can have a lower dose) then you need to negotiate for a change. It's a pity as it's so successful for so many people!

Look at the NRAS website treatment pages - it gives you the information you need. I changed to azathioprine as I'm allergic to sulphas, have unstable blood pressure (leflunomide is out) and failed on hydroxychloroquine (after many years successfully on it).

nras.org.uk/resource/drugs-...

[WilfDog]

Hi Dece

Like many others have said, don't accept it, consult with your care team and rheumatologist again, and say you can't stand living like this anymore. I was on methotrexate for years, alongside etanercept, a biologic, but had to stop it due to contracting neutropenia. If your tolerance of the drug has changed, then you need to have that conversation with them. Don't accept it. Good luck. I hope you get sorted.

[Dece in reply to WilfDog]

Hi Wilfdog and everyoneYes that's true my tolerance to the drug has changed and I really can't stand this anymore I feel so ill most of the time. Thanks for your help and support xx

[WilfDog in reply to Dece]

No problem, at all. I hope you get sorted really soon. xx

[BonnieG123]

I was only on it two years when I literally couldn’t take it anymore. I stopped and went into remission. Developed osteoarthritis and deal with it. At the time I wanted to quit, my rheumy said “it’s up to you!” No argument. I wish you all the best with whatever decision you choose.

[Dece in reply to BonnieG123]

Thanks Bonnie, I'm going to give it a go with the rheumatology, all the best xx

[BonnieG123]

to you as well! Happy Holidays!

[StormySky]

I was prescribed methotrexate around 3 years ago. Lost around 1/3 of my body weight in 2 months and could barely function (I was sacked from my job). As it was over Christmas I stopped all medications myself, as I felt that was the issue, and started to feel better quite quickly. The rheumatology nurse was not impressed and pointed out they wanted to increase the dose and swop to injections so I couldn't keep throwing the medication up. I refused at the time but a couple of months later, when my body had settled, I did try 1x 2.5 methotrexate tablet to try to work out which medication was the issue (I was already being sick a lot before the methotrexate was added from the other medications I'd been given and had tried all the no spicy food, ginger biscuit before bed, etc. which hadn't helped). Within 1/2 hr of taking that one pill I was being sick, sweating, heart pounding, room felt like it was spinning, etc. I went to the urgent care centre and the doctor said methotrexate allergy and I must not take it anymore. Unfortunately the result of my continued refusal to take methotrexate was a letter being sent to my GP to say I declined treatment and so should be managed locally. I was referred back to rheumatology who told me if I want methotrexate to make an appointment for the first jab to be given (my medical notes say allergy and I told them the urgent care centre said allergy and I am scared of the drug because it makes me really ill). I think some rheumatology departments won't accept that the drugs they prescribe can have nasty side effects and that some people can't tolerate them. They also really don't seem to consider nausea/vomiting important. I am looking to move house so that I can try to transfer to a different hospital that may be willing to accept no methotrexate and try something else. I really hope you can also find a doctor willing to acknowledge the side effects are too much for you and consider other options.

[Dece in reply to StormySky]

Oh my goodness, that's a really sad story. I'm so sorry that you've been treated like that and suffered so much. Thank you for your reply it makes my hospital sound good by comparison. If you can move it sounds like a solution but it awful that you should have to . Good luck with everything and best wishes xxx

[StormySky]

Thanks x Its places like this forum that helped me realise there are other alternatives.

Are you able to ask for a second opinion at all? I think you can ask through your GP (I tried, but my request was declined).