I wanna stop taking methotrexate

Hi, i’m 18 yo and i have RA since 2015 and currently i take humira and methotrexate. I take methotrexate every two weeks (i know the usual dose is everyweek, but i was losing my hair and the decided this way) as well as humira, but i dont wanna take methotrexate anymore because i can’t cope with the side effect. I usually take my dose on friday night, on the saturday i have REALLY bad nausea (if i eat i puke) and headaches, on the sunday i ALWAYS faint and my mom carries me in another room and make me eat something calorie dense with sugar water until i feel better and i can sit on a chair on my own. Useless to say, i stay the whole time in my bed because i can’t do anything, but i guess you figured that out by yourself.

Now i know that the combination humira + mtx is more effective and everything, i know the risks but i really can’t keep on like this. My mom always get angry at me because i never wanna do the injection, but i really CAN’T. Those 2 days every two weeks are too much to take, everytime i faint i feel like i’m gonna die. I don’t have any problems with humira, i’d like to just take that alone... i don’t know what to do... my rheumatologist doesn’t want me to stop mtx and i get it, 2 years ago i was basically paralyzed from my RA. But as i said, i know the risks and i understand that i can get worse. In that case i’ll star taking mtx on the IMMEDIATE but right now i’m wondering if it’s really that necessary going through THAT every two weeks.

37 Replies

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  • You are 18, so it's your choice. No-one can force you to take a drug if you don't want to and your reasons seem sensible to me.

    I presume you have carefully explained your concerns to your rheumy already? If not, do so! Preferably staying as calm as you can. And perhaps a different starting point would be to explain to your rheumy that you would like to stop the MTX for three months?

  • It’s not that easy, i’ve been trying to get off of it for the past months but nothing changes. It’s because i’m in remission and my diagnose coincides with my only big flare up that i had two years ago. Since then i’ve been fine, this last years was a really great year for my joints. I already talked to both my mum and my rheumy, my mum just thinks i’m ungrateful. Which is understandable.

  • No I don't think you are ungrateful, I was on MTX for a good few months and I know how you feel, for two days every week I had to stay in bed the headaches horrendous and the nausea. I just couldn't stand it any longer and just stopped taking the injections. there are alternative's.

  • Does your rheumy know about the fainting episodes? I'm sure he wouldn't force you to continue taking a drug that causes such nasty side effects.

    Are you sure you are eating enough in the days before you take the Mtx?

    Do you take Folic Acid...that usually calms down Mtx side effects?

    Why not get your mother to take you back to your doctor & support you changing to another Dmard?

    Altho Mtx is the gold standard there are plenty of others for you to try.Why don't you discuss things with your mother midweek when you aren't fainting & feeling all emotional when you can have a sensible conversation..saying you are not refusing to take your drugs, just Mtx because it makes you feel so bad?

    Is there anyone you can ask to help you talk to your mother?

    She is probably very distressed seeing you so unhappy & sick , & can't get past thinking if you keep taking the Mtx you will get better.

    Hope things get better soon,

  • Please read the answer i gave to nomoreheels.

  • Very good advice from nmh sarayer ...especially about trying to take your mind off the effects after you have injected....

    You say you are in Italy.....I presume your Rheumy speaks good English (or you Italian) so there is no misunderstanding there?

    I think you should definitely ask if you can be prescribed 6 days on Folic Acid.....I found that made a huge difference.

    Post again tomorrow & let us know how you feel after the injection,

    Ciao!

  • Well, doctors here don’t speak any english and i am italian, so no misunderstanding... i just casually learned how to speak english in my teen years (Which saved me in various situations).

    I’ll try asking about the folic acid once again, you all say it does really help... i hope it works for me. (If my rheumy agrees...)

    Thank you very much! I’ll try to post some updates tomorrow.

  • I just wish my written Italian was as good as your English.......I am still plugging away with those 500+ irregular verbs you have!

    I cheat most if the time with Google Translate!

    Keep calm tonight....maybe after letting it all out here you may be able to relax & tomorrow will not be a bad day.

  • Eh, i always feel so sorry for foreigners that want to learn italian, it’s difficult even for us!

    I’ll try, i asked my sister (she’s a nurse) if she wanted to do the injection because i physically and mentally couldn’t. I’m well aware nothing will change but it helps somehow.

    It was nice talking to you, it’s helpful having some kind of support (one that actually gets you)

  • That sounds rough, I take it your Rheumy is fully aware of the symptoms you've described to us? If so, why hasn't he considered using another DMARD concomitantly, it says in the adalimumab blurb that certain others can be other than the more commonly used MTX. Or, has he not discussed trying another anti-TNF, there are a couple of others, etanercept & infliximab. But back to MTX, has he tried reducing the dose slightly to check it's not a little too high? Just 2.5mg can make the difference between my liver values rising unacceptably high or not so me taking MTX or not. What dose of folic acid are you on & how often do you take it? I'm prescribed 5mg every day except the day I inject MTX. It can make the difference between tolerable side effects or having to stop MTX if you're taking too little. Has he checked if you have the C677T MTHFR mutation which stops you from absorbing the synthetic form of folic acid? If he has & you have has he discussed changing your folic acid to L-Methylfolate?

    Apols for the questions but feeling as you do every fortnight must be a living hell for you & if the above haven't been addressed it may be you don't need to & still have your RD controlled. At your age you should be out with your friends each weekend not staying in bed feeling grot. Your Mum only wants the best for your primary health problem, your RD, this is why she tries to help & gets upset at you so please don't think she's being an ogre. The main thing is you talk to your Rheumy, question an alternative DMARD, dose reduction, folic acid, alternative treatment etc. You could maybe write a bullet point list that you can refer to if he makes you feel nervous questioning anything. If you don't feel you can't get your problems across to your Rheumy well enough for him to appreciate the situation ask your Mum if she will attend your appointment with you, it could help having her perspective of how things are for you just now. If none of this makes any difference to his perspective you can always opt to see a different Rheumy, there's nothing to stop you changing hospitals even just as long as the treatment you take doesn't make you feel worse than the disease itself.

    Most of all don't feel you're alone. There are other people who can't take MTX & they don't have uncontrolled disease, their Rheumy's have found alternative meds for them so don't worry. 😙

  • You got my point with that youth thing. I’m prescribed 5 mg of folic acid the day after i inject the mtx, it does absolutely nothing. Side effects remain invariate. I already talked to both my rheumy and my mum; the thing is i’m in remission and if we go back in time my case of RA was really severe. They don’t wanna take a risk and i get it... neither do i. Here in italy it’s really hard to get biological meds, i’m really lucky to be on humira. My mum basically says i’m ungrateful and selfish for ONLY thinking about stopping mtx without knowing the consequences. We always fight... i really don’t know what to do. I also suffer from anxiety and depression, so she thinks my “view” of seeing things reflects on the effects of mtx and so they are even worse. One year ago the side effects were mild, i was overall fine and i could at least eat a little the day after. These last couple of months have been HELL. Every month it just gets worse and worse. I don’t know if that’s really just my head or my body just can’t take it anymore. I know that i’m really lucky but only thinking about mtx makes me go into full panic and hysterical crying mood. I hate it. I can’t talk about it because i always looks like a baby (because of the tears) and nobody takes me seriously (of course). I don’t know what to do. I’m gonna try to talk AGAIN with my rheumy on monday morning... now i’m waiting my sentence to death (injection time) which is in a couple of hours and i’ve been crying for the past 2 hours. Nice. Thanks for your suggestions tho.

  • You are in a state, understandably, but I wonder if you also need help elsewhere. Please don't misunderstand me, I'm only concerned for you, but do you think you would benefit from talking to someone? I hate to think of you feeling as you do, panicking, that's indicative of fear which I completely relate to, I had a situation that led me there. I'm thinking back to when I was exactly your age, a long time ago I admit, but I hadn't the thoughts & feelings you're having to deal with, I went on holiday that summer, to Italy coincidentally, with just a rucksack & a plane ticket, no idea where we were going to stay, getting on the train down the coast & getting off where we liked... so free. You're between a rock & a hard place, the meds work but one makes you feel so awful. Maybe you could discuss how you feel with your GP, he any be able to suggest CBT or Mindfulness.

    The first thing I would ask your Rheumy is about increasing your folic acid. I started on 5mg just the one day, the day after, when I had hair thinning, that was increased to the day before too which solved the problem. I now have a different Rheumy (I was diagnosed in Spain but now in the UK) & she prefers all herpatients on MTX to take 5mg 6 days a week just not MTX day, I think it's so there's less likelihood of them having side effects & they can remain on it. The day after I now only feel a bit more tired & have less appetite, I just have avocado & gherkin (I know, weird!) & a light dinner, crispbread & goats cheese or peanut butter on toast. Do try making a list, it may help you keep things together better & your Rheumy will be able to discuss this properly with you if you're calmer, as you say take you seriously. Try asking about a slight reduction in dose, as well, as I said only one injection dose lower solved my problem, that may be all it takes for you & you could still be controlled. Or different treat even.

    How about having a nice relaxing bath after you do your injection? Or focus on something you like, to keep your mind on something other than the MTX, read a book, magazine, a game on your iPad/phone or whatever you would normally do to distract yourself. Or carry on talking to us, there's always be someone on the site. I'll be around a while yet. Take care. x

  • I’m always on my phone during the mtx hangover because i feel so weak i can’t focus on anything so reading or watching a movie is out of the question. I just scroll some social networks or i try to watch stupid youtube videos. It doesn’t really work but at least time goes kinda faster. I’m in therapy with a psychologist but i’m having problems with ... you know... talking to him. In general. Maybe i can try to talk about this next time. To be completely honest I’m really scared to talk to my rheumy, the words never come out as i want to and i end up not explaining every single problem... even if i write them down. She reduced my dose already (at first i injected mtx once a week) and i asked about the folic acid once but her answer was she wasn’t sure about taking a higher dose of it throughout the week because she was afraid methotrexate wouldn’t work as well. I feel like every time she just repeats herself and i’m wasting her time. Anyway you are very kind and helpful, thank you so much. I really needed answers like yours that didn’t invalidate my suffering.

  • Do you have anything you could lose yourself in? Do you paint, can you draw, craft or anything like that, something you could lose yourself in? With Christmas coming could you make some decorations, cards, tree decorations, table decoration something like that? Some of our members here have adult colouring books, do you have anything like that there? Or relaxing music, not whale music but there are meditation-type apps out there, you could lie, on your bed & relax into it. If I can say if you're struggling talking to your Psychologist he isn't doing his job properly unless you' expectations inky recently started therapy. My h has had need to see one for a while now after his heart bypass left him with chronic pain & he's the type who just won't talk about anything to me, yet his Psychologist dug deep little by little over several months & he's found it so helpful.

    Do you think you could try your best to keep yourself together & be calm when you see your Rheumy? If you do then maybe you'll be able to get your feelings across & she'll be more perfect approachable, if that's another issue? If you can & explain you're having no social life, you're at college all week but never socialise or get to see your friends because you're poorly all weekend. Appeal to her younger self, how would the 18 year old her feel about that. If she says she's not sure MTX wouldn't work as well taking folic acid more days tell her you're willing to take that chance, that you appreciate that you're in remission but like to try taking more folic acid. Even, if you think it would help, say many people here take it more regularly, up to 6 times a week & are doing well, hardly any side effects. They are asked not to take it on MTX day because that's when they think it reduces the efficacy of MTX, although some in Canada take it 7 days. Or would your GP prescribed an antiemetic, an anti-sickness tablet? I recently stopped a med because I thought that I was having a rare side effect, my Rheumy wasn't so sure but referred me for tests which proved I had the side effect so I asked to stop it to see. My symptoms in the 6 weeks since I stopped it have improved quite a lot, I had repeat tests on Tuesday & had it confirmed, the symptoms are reducing. So I shan't be going back on that med but at least my Rheumy worked with me, tried something I thought may ease my symptoms. What I'm trying to say is your Rheumy should work with you & give you the opportunity to test the theory out.

  • The antiemetic doesn’t work anymore... last time i had to take it trhough an injection. I just started recently seeing this psychologist and i still dont feel comfortable in putting my feelings and thoughts out. Anyway, i feel like i can’t talk about social life and all these things to my rheumy because it sounds like a whim, it just looks like i’m whining over stupid stuff... it’s like my health VS social life... i’ll try to mention it very briefly though. And i’ll surely ask about the folic acid. Thank you for your tips, really.

  • Injection antiemetic works quicker so do ask again. Maybe thronged you see your Psychiatrist the more relaxed you'll become, it took a good few months of weekly appointments for my h to start feeling comfortable enough to share his troubles & fears.

    I don't wish to sound pushy but unless you explain how disruptive MTX is at the mo the less ammunition you have for changes to be made so don't be subtle, tell it to her as it is. She's not a mind reader, you're not whining & it's not stupid stuff, quite the opposite it's serious. Things won't change if she doesn't realise how badly it's affecting so you be honest. Right, now I've stopped finger wagging you take good care this weekend, I hope you're ok to tomorrow & that Monday brings results. x

  • I know how you feel on mtx .I take it and I feel sick if I don’t do certain things .I take mine at about 9.30pm always have a bowl of cornflakes with sugar & little milk or a banana or toast wth jam. Does the fact you take them at week end cause you to miss out socially .you could ask your doc. If you could change your day to take it.the morning after taking itI can feel sick but If I eat breakfast it helps.i know when you have feeling about the drug it always makes taking it fearful this was how Iwas, If taking it later helps and you have some sleep and less reaction you might begin to feel a bit better about taking it .Dont forget your folic acid.

    Hope these ideas help good luck

  • I actually take mtx on friday night, usually around 11 pm so that i can just go to sleep. When i wake up i feel horrible and this feeling increases until sunday morning, when i usuallly faint. On saturday if i try to eat something i’ll puke it (like, i tried to ate an orange last time and it just came out a couple of hours later completely undigested). I can’t change my days because from monday to friday i go to school, you can imagine how difficult that is. And I never forget to take my folic acid! Thank you for your tips tho. It’s nice to see someone with the same mtx routine as mine!

  • Hi Sara,

    I found taking methotrexate with only a little food increased the stomach problems. I switched to taking it with my evening meal, which is my main meal of the day and that helped. If I don't feel like eating a lot that day, then I put off my dose till the next day. Have you tried taking it with food? I mean a decent meal, not just a biscuit.

    I am surprised that you are only prescribed the folic acid once a week. When I got side effects from methotrexate the hospital increased my dose to six days a week and it helped. Perhaps you could ask about that?

    I don't know if it would help you because your symptoms sound terrible, but I found taking a bacterial supplement helped, it contains the 'good' bacteria that your stomach naturally contains. It's called acidophilus. I took it all th time to begin with because antibiootics had messed up my stomach, now I take it on the day i take the methotrexate, it really helps.

    Plus what the others have said - there are alternatives to methotrexate, ask about them.

    Best Wishes

    Jenny

  • I tried taking mtx right after my main meal but it was hideous... the next day i could still feel the food i ate in my stomach. I’m really looking foward to increasing my folic acid... mtx + humira seems to be my go to mix for now, it keeps me in full remission...

  • Oh dear, that's horrible, I can see why you want to stop taking it. Fingers crossd for the folic acid

  • If you are to eat anything you're best avoiding anything citrus like oranges, or anything with any great taste. Something like toast or anything bland, porridge is a good option & stomach liner. One of our members, Ali, used to take ginger with hers, it helped the nausea. Not a full meal either, that could increase issues.

  • I learned my lesson with oranges... bad bad idea.

  • Hi if you have tried it for a while and getting all the side effects.you can and should stop taking it .I would just stop now dont take it.you are young it is all about tweets and trieing meds to see wot suits.and wot outways the risks.you can try something else .unless there is inflammation in blood etc and progression.you could try for a year of pain killers and physiotherapy .and chronic pain courses .and wellbeing courses and living life to the full courses.you can try this treatment you are young .ask doc or rumatologist if you can do this .thats if you fancy it .take care good luck

  • Can't you have talk with your rheumy and say you want to change to something else as it is making you so sick.There are lots of others.My liver couldn't tolerate methotrexate so I am on sulfasalazine with steroids etc.

  • Steroids are not an option and i already tried sulfalazine in the past... didn’t work. The thing is: my liver and my blood test are ok. I’ll try to ask for increasing folic acid.

  • My daughter is 14 and was very sick on methotrexate. She had her folic acid increased to 5mg x 6 days per week (but methotrexate day), and was also given anti sickness to take one hour before the injection and 12 hours after. This has improved things so much that she now often forgets to take the anti-sickness, and she is still ok. I have to say, she does hate her methotrexate jab - she would also love to stop it. I think it does have a very severe psychological impact.

    The anti sickness she takes is the same one as is prescribed for chemotherapy - odansetron

    You can probably buy the folic acid as a health supplement if your doctor won’t prescribe it for you

    It is not acceptable that you feel this ill. I hope you find a better balance soon. Best wishes

  • I take an antiemetic but usually doesn’t work... last time i took it in injection form. I’ll try the folic acid thing because it seems really helpful for everybody! I hope it works for me. Thank you so much, i wish the best for your daughter

  • That's really a horrible reactions. I'm surprised your doctor let's it continue. Has he been doing liver enzymes blood test on you? I was taking Methotrexate and I had to stop because my liver enzymes were elevated. But frankly I had already told her I want it off because I was getting terrible mouth sores. But now in place of the Methotrexate she wants me to be on Humira. The only problem is I live in the US and I have Medicare for insurance. And with my medicare insurance it would cost me $850 a month for me to buy Humira and I can't afford that. So right now I'm not on anything but Plaquinil. So I wonder why you need to be on both. I'm not trying to question your doctor I'm sure there's a valid reason but I do wonder if it's not worth trying it without the Methotrexate just to see how things go.

  • My liver is fine and i don’t have any side effects on long term, just the days after the injection. This could be why she didn’t take me off of it. In italy humira is free, but it’s really hard to get for this reason... i guess i was a lucky one because i’m so young and they study my case (for they i mean bigger people and bigger hospitals). Apparently humira works its best in combination with mtx and that’s what made me go in full remission. This is my go to mix, i just wish the side effects weren’t so bad.

    To be honest sometimes i think they just see me as an experiment and not as a person.

  • Well I am very sorry that you're having to deal with this especially as young as you are. I hope whatever you end up doing it works out for you in the end. Because that's what matters. Being able to live a productive life is so important.

  • Hi. I'm way older. I take very little methotrexate, one or two pills per week, and now my hair is no longer falling out. I also take the Enbrel injection. I have no noticeable side effects from either drug. I have slowly reduced the amount of my medication with the help of my physician. I am also on a gluten free, dairy free vegetarian diet. I take plenty of supplements also. My RA in still under control. My numbers good and I usually feel well. I was very sick and this has taken years.

  • My rheumy said the reason we continue with mtx with biologics, I'm also on humira, is it prevents our bodies building up a resistance to the biologic. Many people, who don't take a dmard find it stops working fairly quickly and with them being so expensive we want our meds to work as long as possible. I was on mtx sulphasalazine and plaquenil for 15 years before it stopped. I've been on mtx and humira for 3 1/2 years. Had RA 20 years. X

  • Thank you for your reply. I didn’t know that. And i’m guessing mtx is one of the most effective dmard... and that’s why my rheumy doesn’t want me off of it. She really tried her best to give me the lower dosage possible.

  • I’m on day 2 of methotrexate and i’m starting feeling better, i didn’t faint this time (thank god) and i just ate a toast with some jam. Yesterday i didn’t eat or drink anything, so right now i’m dehydrated. I’m also still a bit nauseos, but I know it’s gonna get better. Thank you everyone for your support and your tips, it was really helpful talking to you! I hope i can talk with my rheumy tomorrow...

  • That sounds better, let's hope you've turned a corner. Do try to keep hydrated, it helps flush the kidneys so plenty of water around MTX time, particularly the day you inject. All the best for tomorrow, I'll be thinking of you & sending supportive positive vibes. x

  • .

    Kindly see if this makes sense to you 👱‍♀️, your mum 👩‍💼 , & your rheumatologist 👩‍⚕️ , sarayar: 'If, When and How to Safely Lower Methotrexate' vimeo.com/239379622

    [Consider it 'in context' of responses over at your other post: 'Vegan diet and RA'; healthunlocked.com/nras/pos... ]

    .

    Merely for you & your mum to consider (& share with your rheumatologist) if you're interested:

    • Alisa is a young lady like yourself, sarayar, where she along with her mum (Laura) talk about her meds:

    Transcript: paddisonprogram.com/alisa-o...

    .

    • There's also a few more references to youthful RA-ers (like yourself) over at ennuitude's post, RA Newbie Introduction ( healthunlocked.com/nras/pos... ), if you're interested.

    .

    • And, there's 'Katy's Inspirational Progress Against Lifelong Rheumatoid Arthritis' which may comfort you to know you're not alone in disease striking one so young, & you've ability to improve & learn how to manage the disease well in time:

    .

    .

    Worry not, sarayar. 🙏 😌

    There's abundant hope (& time) to improve & reduce meds over time while working hand in hand 🤝 with your rheumatologist. 🙏 🍀 🌺 🌞

    .

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