Hi, hope everyone's well, my rheumy nurse as upped my methoject, from 20mg to 25mg, first 2 weeks wasn't to bad, last 2 weeks has been horrendous, I inject, sat morning, by teatime I'm so tierd, but Sunday I spend the whole day wiped out, nausea like sea sick. Horrid headaches, feel slow, not with it and can't function, This went on right till Tues night. Im literally feeling sick about sat mornings dose (this sat) I've been on methoject for 7 months, and still in a lot of pain, so it's not doing much anyway, anyone else had side effects like this? Thanks in advance
Methotrexate : Hi, hope everyone's well, my rheumy... - NRAS
Methotrexate
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jojoishere
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I get exactly those symptoms. I have been prescribed anti sickness tablets. I take one 2 hours before i inject. They help . There are lots of different ones. You can ask your rheumy dept or your gp to prescribe some. 🙂
Oh and taking folic 6 days a week
I already take the folic acid 6 days, IMight ask about the anti sickness tabs thanks.
I'm sorry you're feeling so horrible Jojo. I really think a call to your Rheumy nurse is needed, preferably the one who increased the dose if you know which one it was, let her know your response to the increase. It may be things settle, but on the other hand it may not but it's the finding out isn't it, & that’s only by continuing & potentially feeling the same next time.
I take it you're taking your folic acid? I know it's an obvious question but needed to ask. What dose are you on? If it's not 6 days you can ask for an increase. I have antiemetics for when I increase my dose (which I’m not doing again!), you could ask your GP if he'd prescribe some if you don't have a prompt response or resolution from your nurse, that should stem your nausea & sickness & have one less thing to deal with.
Do ask when you're likely to be put forward for biologics, if you haven't. It was discussed ages ago so I think you should be given some idea as to how long you'll be expected to wait. If they say you'd to go up to 25mg MTX first you have & it's not tolerable, though they may ask you to reduce back to 20mg.
Who is the handsome boy in the pic?
Hi nomoreheels, that's my best. Mate buddy 😊Yes I'm on 5mg folic acid 6 days a week.
I've got a telephone consultation in morning, so going to discuss it with nurse,(I never see the same one) so it's hard to build a relationship. Biologics were discussed back in Sept last year, so hoping things will move forward thanks for reply, hope your ok?
That's good you have a tel consult in the morning. So, you have nowhere to go with folic acid. If it's not offered you could try asking if you can reduce back to recover, or if an option, have a week's rest from it. If you feel it may get responses your 25mg symptoms across better maybe jot down beforehand just what you want to say, list how it's affecting you as have in your post, like a crib sheet. Sometimes things can get missed in conversation when not face to face & the opportunity is gone.
Buddy is a lovely boy. 🐶
Thankyou he's my shadow 😊I've just wrote a few points down on paper so I dont forget today, I can't even cut back to 20mg as they took back these when they delivered the new dose, so I might ask if I can skip a dose
Aw, that's nice. I have one who's the same. Good luck, let us know how things went?
I agree with nomoreheels. It doesn't seem as though you are getting any benefit from the metoject only the adverse side effects. You have been persevering for a long time so maybe you cannot tolerate it and need an alternative or better still a biological treatment. Please get back to your rheumatologist and tell her how ill you're feeling.
Thankyou got a phone consultation in morning, so will discuss it then.
I had a similar experience when I went up to 25mg but it took a couple of months to build up. By then I had started Sulphasalzine which had a good effect within a couple of weeks so I asked to drop back to 20mg Methotrexate and the side effects went - just have a fizzy head for a day now. I did pause the Methotrexate for 3 weeks and my jpints complained so for me the combination works well. At my last appointment with the consultant, he mentioned increasing my Sulphasalzine a little now and then reviewing next year and possibly dropping the dose of Methotrexate a little. I'm happy to stay on it but the effects need to be good enough to outweigh the side effects.
Hi boxerlady, they tried adding sulfasalazine but i had a bad reaction so had to stop it altogether, I can tolerate the 20mg methotrexate, so maybe go back dwn to that dose glad your feeling better.
It's disappointing that you're not feeling better by now. Maybe they'll consider biologics soon? I'm also on Hydroxychloroquin although have recently dropped the dose and may stop it all together next year. When I started Sulphasalzine they said that if it didn't have the desired effect the next step would be biologics.
Hi boxerlady, how did you find the hydroxychloroquin. ( side effects) when you first went on this med?
I had no side effects from it at all 😉You do need to have an annual eye test/scan as a very rare side effect can be eye problems.
Yes me too. Sick for 5 days after and dreaded the injection. I was eventually put on a biologic ( suffered far too long thinking it would get better) and went back to low dose tablet mtx.
It is interesting how just abit more medicine can really mess you up. I dropped down on leflunimide from 20 mg each day to 20 mg 4 days a week and 10 three days a week. Made all the difference. If it is getting to the point that you don’t want to take your injection it is great you are talking to your consultant. I only lasted 3 weeks on methotrexate. I had a huge stomach ache and could not sleep or even walk. Just wondering what side effects you got from sulfasaluzine. I just started it and I am so thirsty. And I have a headache.
Hi smilelines, the first time I tried sulfasalazine, headaches, chest pains, and got up to 3 a day and had a funny turn while walking buddy.Then tried again a few weeks later started on 2 a day same thing happend chest pain, headaches, I had red blotches on my face and neck, and eye pressure I lasted 2 days so gave it a good shot
But that was me you will probably be absolutely fine 🙂
We’ll see how it goes. Sure hope the headache goes away. I was feeling so poorly with a cough and chest pains today I even took a Covid test!!! It was negative. Maybe it is the sulfasaluzine. Thanks for the information. I forgot to mention that I felt worse and worse on the methotrexate. Each injection I felt worse not better.
Absolutely, felt too fatigued on 20mg.......like a rag doll, could barely function
Hi same with me. My methotrexate was increased to 22.5mg on its way to 25mg and like you I was fine for a couple of weeks and then my nausea got worse and worse. I dreaded taking it. In the end I was left on a dose of 20mg with folic acid 6 days per week and they added Hydroxychloroquine instead. Not sure whether that’s helping or not. My hands are currently stable but my feet are dreadful. I shuffle these days and have constant pain. Biological have never been discussed with me - I’m just given Prednisolone as and when needed on top of my other drugs. Seems to be a reactive approach rather than a proactive approach in my area.
Hi Julie, this is so sad to read, I hope you get some relief soon, my shoulders, and wrists are my worse pain, but pain all over also, I hope you get offered a biologic soon it could be your icing on the cake.
I found I had to take my MTX at night then I slept through the fatigue and most of the other side effects. Definitely mention to your rheumatologist, it may be you need to reduce back slightly, especially as it is causing issues for many days after. It may be they will consider a biologic now you’ve tried but struggling to tolerate the increase in dose. If they do suggest persevering for now then try doing injections at bedtime. 🤗
Hi Maureen, I used to take mine in the evening, but tried to time it when my worst side effects kicked in and seemed to be after 24 hours, so swapped to mornings.. And I just found the same thing happend but the day after, (if that makes sence) but I do find now by Saturday tea time, I'm ready for bed and could sleep all the next day, but still tierd, 😴 so don't no which is best
Mine kick in after 24 hours too. Currently I'm injecting early evening on Saturday so that I feel the effects early evening on Sunday. Now that I'm back to 20mg I feel ok by Monday whereas on 25mg it was lasting several days.
Maybe that's what it is then the dose increase I can't tolerate, as I think my body was just getting used to the 20mg, and wasn't feeling to bad just the next day really. Now it's going on a few more days.
That's what I felt and when I rang the nurse helpline to say so, she spoke to the consultant who agreed that I could drop back to 20mg.It was easy to argue my case as the increase to 25mg hadn't helped my joints even after a few months.
Injections made me really poorly. Back on the tablets!
I also take an antiemetic and take my Mtx with a ‘proper’ meal about 6/7 pm.
I was fine on the tablets not injections for about a year but then the sickness effects kicked in . I was nauseous for the next day and a half .
☹️
I had a similar experience to many. Inject, wiped out and nauseous for days, a couple of days okish, time to inject again.Injections did not reduce the nausea and fatigue, nor did altering folic acid dosage.
Don't suffer, best to contact your rheumatology nurse.
Folic acid daily?
Methotrexate is not a pain killer. It is used to prevent swelling and progression if disease. Painkillers should be prescribed via the gp. If the higher dose is intolerable, tell the nurse, and they can add in something else with low dose Mtx. Criteria has to be met to progress to biologics, and perhaps you do not meet that. Hang in there. It takes a while to find the right meds that suit you. Take regular pain relief and use brufen gels etc
Hi, yes on naproxen, and pregablin for fibromyalga, I've still got lumpy wrists, and lots of pain in shoulders and still having flaires, I probably won't qualify for biologics yet, but I'm so worn out with pain, I'm on the 6 days folic acid also.
Oh you poor thing. Pain sounds more fibro but if wrists still swollen, ask for yr bloods to be checked.
Sorry to jump in but I've just started mtx injections and if they don't control the pain then what is the point? I never get any swelling only excruciating pain in my joints especially elbows and feet. I thought if mtx controlled the disease and modulated the immune response then it would dampen down the inflammation hence pain would be less.I have Psa and enthesitis of the elbows.
I hope these injections work otherwise what is the point? Potentially damage your liver etc for no or little benefit.
This worries me.
Hi sorry you are suffering so much but my advice is to try and stick with it as it is such early days. Your body needs to get used to the higher dose and adjust. It will take up to six weeks before you will notice any benefit. I had my dose increased from 20 to 25 mg last autumn when I had to come off the Tofacitinab and am really noticing the difference now and all nausea gone.Good luck and ask nurse to prescribe anti sickness to help get you through.
Thankyou, love your profile pic 😊
I’m sorry to hear you’re having similar problems to me. I had to give up after 10 months for these symptoms . ( ps love your wee foggy … so cute 🥰)
Hi, he's my baby he's so loving, he's got a fan club round where I live, I'm sorry it didn't work out for you, hope your on something that's improved your symptoms?
Still trying to find ‘the one’ unfortunately.
😔 don't give up x
So had phone consultation this morning, nurse has told me to skip this week's methotrexate, She's thinking of dropping me back to 20mg but wants to talk with consultant first, she mentioned leflunomide,And Hydroxychloroquine,
And also a biologic, I really don't no what they are going to do next,but she thinks she might want to see me first and inspect my joints, a f2f. So I'm having a weeks break 🙃 🙂 oh the joy. So it's a waiting game for them to contact me
I hoped she'd say both have a week off/go back to 20mg. The rest will reset things hopefully. They'll need to see you in clinic if they’re going to put you forward for biologics as they'll have to check your DAS score & they can only do that by physically examining you. I hope it's soon.
Me to. ive been off work 9 months now, and they have stopped paying me. I just want my life back, well 50% will do, I can't stay home its driving me crazy🤪 I live alone and do everything myself. Being like this I've got to a stage where I'm thinking is this as good as it gets, accept it, but been told I should be living a near to normal life. I'm still waiting. I'm so inpatient but will keep pushing through till I feel better
What is a DAS score and how can your joints be checked by looking at them? This wouldn't work for me as I don't get any swelling just pain.
Hi I think it means Disease Activity Score. I don't get much swellings, but still have a lot of inflammation and pain.
in reply to Cheylann
DAS28 is a disease activity score and is a measure of active disease specifically in RA. The DAS score is meant to determine the activity of your disease based on an equation that involves the number of swollen and painful joints out of 28 that they check, sometimes along with esr and/or crp levels, and there’s a threshold DAS score that’s required to be considered eligible for certain drugs. However, it doesn’t include any assessment of the feet despite foot involvement for many people, and some people are seroneg, so it’s possible to score inappropriately low in spite of having very active disease.
It’s not appropriate to use the DAS28 for PsA, although from personal experience, not very good consultants may well try to anyway 🙄
jojoishere in reply to
Thanks for explaining this so thoroughly
Cheylann in reply to
Thank you.Very worrying that they treat Psa the same as RA as i have been diagnosed purely on symptoms and scans of my elbows which are inflamed. I don't get swelling or any raised blood levels. All appears normal but I'm in incredible pain.
So, it worries me, if mtx doesn't work, what will they do? I guess I should take one step at a time.
They have already told me you need to start with gold standard mtx and if it doesn't work have to try other dmards and then be scored for biologics. She said you need 3 or more swollen joints. I don't have any. Quite stupid putting everyone in the same box when clearly these diseases affect people differently hence we need different treatments?
in reply to Cheylann
Treating the disease the same way is appropriate, because repeated studies show that PsA does respond the same way to the available drugs. Persistent skin psoriasis is also treated with the same meds even without arthritis being present, because it’s an autoimmune process driving both. In terms of the arthritis side, assessing disease activity is more nuanced because, as you say, many of us are completely seroneg. I’m quite literally watching my joints become more deformed almost by the day at the moment, I currently have visible, transient swelling in 8 joints, and I’m in a fair whack of pain, but my crp and esr are both absolutely normal. That’s PsA for the majority of people. It’s why I went undiagnosed and untreated in spite of my best efforts for more than a decade, having already had arthritis for a decade prior to that, which is partly why I’m in the state I am now 🤷♂️
A good rheum is well aware that PsA presents slightly differently and needs to be assessed differently. That said, pain is subjective and not definitive in many regards, so issues like swelling and inflammation have to be used to uniformly assess patients. The criteria for biologics for PsA is 3 swollen alongside 3 sore joints on two occasions a month apart, however my understanding is that inflammation on examination and/or ultrasound counts in the absence of visible swelling, and there is some flexibility open to consultants. My wrists don’t look visibly swollen every day, but the underlying inflammation is consistently obvious on examination. That’s why doctors feel the joints rather than just looking at them: low level, internal inflammation can be felt - it’s sometimes referred to as having ‘boggy joints’.
You’re very early in your treatment journey, Cheylann, and at the risk of upsetting you, it does sound from your replies like you still have some issues around accepting the diagnosis. It’s normal to have concerns about what if treatment doesn’t work, but the only thing any of us can do is stick with it and hope for the best. Some people find mtx works beautifully for them and at relatively low doses, others don’t, but either way, establishing treatment always takes a bit of time. It’s hard when you’re in pain, and I absolutely get that, but there are options to help there: have you been offered a course of steroids whilst waiting for the mtx to get into your system?
Cheylann in reply to
Thanks Charlie. I'm very early in my treatment. You are right, I resisted the diagnosis for 4 years not quite believing it was immune driven however, have realised my pain isn't going anywhere and my fingers are becoming deformed. I have permanently sore elbows. So, I've accepted I needed to try something so hence Mtx. I'm praying that it helps and that is all I need but reading all these experiences, I doubt 10mgs will help but I live in hope. As you say some do well on it.
I've been given a steroid injection 3 weeks ago which has already worn off. I can't take tablets as I'm the past suffered a stomach bleed.
Anyway, I'll try to be patient. As you say its so difficult when in pain. Very frustrating!!
I'll try Cheylann. DAS is Disease Activity Scale, a 28 point examination & usually performed at each clinic visit. This explains nras.org.uk/resource/the-da... As you'll see it's not just looking at the joints, it's an examination so even if there's no obvious inflammation (though your Rheumy may detect otherwise) your joint pain will be included in the score (as a tender joint count because your joints are palpated) as well as your assessment of how you think you are at the time (Global Assessment). Where it fails is in those who have activity in the joints of their feet & ankles, & many of us do. This is due to the DAS 28 being a slimmed-down version of the original DAS (44 joints rather than 28) which does include 10 MTP toe joints & ankles plus the sternoclavicular & acromioclavicular. So, the score isn’t necessarily representative of our total affected joints, meaning we may be under-scored resulting in not necessarily being in the correct group of either remission, low disease activity, moderate disease activity or high disease activity. This can potentially mean the difference between being accepted to be out forward for biologics or not, in theory.
Hope this helps.
in reply to nomoreheels
Great explanation, NMH, but just wanted to point out that the DAS28 is specific to RA and not appropriate for assessing PsA or AS. In PsA, the PsARC should be used to assess disease activity with separate, specific criteria used for biologics, and in AS, it should be the BASDAI for both. I know the DAS isn’t ideal for some patients with RA, but a lot of patients with PsA or AS wouldn’t be able to get anywhere near to accessing biologics if they were assessed using it. I’m currently wrecked with active PsA, but my DAS only comes out at 4.1.
nomoreheels in reply to
Thanks Charlie. I have to admit I didn’t know Cheylann has PsA. My info is based from what I've experienced with seropositive RD. I should in hindsight have added a caveat but as I say, I didn't know but should have checked. Thanks for pointing it out.
Great to hear that they're considering other options 👌
I'm on 20mg MTX injection already wiped out day after sometimes next day. Headache wise can only suggest downing water as much as possible.
I try this to flush out the side effects.
Think afects take 3 months but your RA team can advise no harm calling them eh?
Feel for ya hope it improves asap.
Love you little furry friend 
Thankyou, I will try and drink more water, think it's going to be trial and error hope your ok 🙂
I'm ok at present thanks
Are you taking in enough liquid?Dehydration can cause the symptoms you describe….worth glugging down a few more glasses of water.
I drink loads of water, more so the day before and after methx.But will keep in mind
🙂
Very bad, feel for you. I was like that for years on MTX, feeling sick every week for a couple of days following the dose, then the last 2 or 3 on it - terrible nausea full time every day & injecting instead of pills didn't help. No one ever mentioned taking more Folic Acid so I was only on it one day a week! Still can't believe went for those years feeling so horrid all the time, but eventually went on to Leflunamide which was great for me for 7 years with no side effects (until it stopped working).
Like others are saying - sounds like anti-sickness meds may help & should help. With me I think I was on it too long - 13 years - and the body got poisoned with it in the end & affected liver etc.
Good luck!
Oh that don't sound good 😕 has your liver recovered? 13 years! That's a long time, has your ra progressed? Or is it under control now? I hope your in a better place now best wishes to you
Thanks JoJo, yes, liver recovered fine! For most of that 13 years I was on a 'maintenance' dose of MTX - 10mg - as it did a pretty good job managing the RA, it was just the nausea that spoilt things. Last year (after leflunamide stopped working a year ago), the biologic adalimumab didn't work, so was the very worst I've ever been with the RA, life of total pain/agony & debilitation! But since mid December I'm on filgotinib ( a JAK-inhibitor) & thank goodness am seeing some slow improvement.Take care & truly wish things improve for you, perhaps on a different drug/ biologic. Good Luck!
I also had horrible side effects from MTX which increased as went from tablets to Metaject. For me it did not settle and I then went on to have biologic medication. Talk to Rheumatology. Methotrexate does not suit everybody. My side effects stopped really quite quickly after stopping the methotrexate but obviously the Rheumatoid arthritis symptoms did not !
The biologic Imraldi was magic but short lived for me so I now still take a small amount of methotrexate 7,5mg to stop me “becoming immune” to the current biologic medication.
Keep talking to your Rheumatology helpline/ nurse/ consultant/ GP etc.
Good luck. Xx
I got that side effect from tablets. Injectable is supposed to alleviate the naseau, but after reading many of these posts, I am surprised that's not the case. Why inject rather than take tablets, if they're both going to make you sick. I take a few tabs in the a.m., and a few in the p.m. to avoid getting too much at once.
I guess that dosage will be lowered and something else can be added.
I only inject 10mgs and so far only had 3. I get fuzzy vision and feel out of myself and quite weak almost walk around like a robot. This also lasts till Tuesday. I inject on a Saturday night. I take an anti nausea before I inject.
Must say if I was still in pain on 20 mgs, for 7 months think I would stop. Maybe they think the extra 5mgs will help.
Are these side affects new? If so, they may pass.
Re update Had a call this morning, there going to put me back on 20mg methoject, and also start me on a biologic called Adalimumab.
It seems the methotrexate isn't working on its own to get it under control. So got to have a chest xray,and blood works before I start it, I'm happy and a little nervous at the same time. I hope it works for me and gives me a a glimmer of hope for the future 🙏
That's great news - I'll be keeping everything crossed for you! 🎉🤞😊
Thankyou 😊
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