Hi everyone, i’ve been on methotrexate tablets (20mg) since february. I found they made me really sick (taking 8 in one dose and one folic acid the day before) so my consultant decided to split my 8 tablets into 4 so i’d take my methotrexate over two days and then upped my folic acid to everyday apart from MXT days. This was okay for about 2 weeks until last night when i had horrendous sickness and stomach pain.
I usually eat a full meal at tea time and take my methotrexate afterwards so i can sleep through the side effects and tiredness etc however this time i was unable to sleep due to how much pain i was in.
I always feel a little ill after taking MXT but this was something else, it has only ever happened one time before but this was unbearable and I was considering calling 111. I was wondering if anyone had tried the MXT injection rather than taking the tablets orally? I’m not very good with needles but at this point i’m willing to try them as my stomach was terrible and i felt very sick.
Also another question, i’ve been feeling so fatigued and down due to my condition yet my bloods keep coming back fine, not anaemic, no problems within thyroid etc so i was wondering if anyone has any helpful coping mechanisms. The doctors took me off pain relief as it wasn’t working so only taking paracetamol & sometimes it gets abit too much. Thankyou
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oliviagodfreyxx
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I had the terrible sickness on mtx tablets . I have now gone on to the injections . I am really really squeamish but the metoject are ok. They don't look like injections really . Its just a matter of taking the top of , putting the tube on your thigh and clicking . Nothing like an inoculation or blood test type jab. The rheumy nurse was great when she showed me how to do it. It also means that you can lower the dose as its direct to your system and so none is lost through digestion.
I still feel a bit travel sick type nausea the day after injecting but not nearly half as bad as the tablets.
My advice is talk to your nurse or rheumatologist asap and give the injections a try.
With the fatigue I think its no good fighting it as its not the usual fatigue that you can work through. I just listen to my body and treat myself well , if I am tired then a book , a cuppa or telly or even a lie down . Its difficult if you have been active, and i felt like i was giving in and guilty at first , but treat yourself kindly. Kind thoughts to you x
thankyou so much i always get nervous when having my bloods taken etc but i’m
willing to try the injections to see if they help ease my stomach pain.
trying to book an appointment so i can hopefully talk to my consultant about them, i think working long hours on my feet doesn’t help but i need money!!
did you have to monitor your bloods as frequent again when switching to the injection? i usually had mine done every few weeks (we were going to switch to every 3 months now that my sickness had gone down (well we thought) but last night it came back)
I had blood tests every 2 weeks for a month or so then every month , then every 3 months when moving to injections, as when you first start on mtx. I had to increase my dose of mtx , so I could try to come off steroids, and started the blood test cycle from the beginning again.
Lots of people find that using the injections help to reduce the sickness with methotrexate. As does taking the folic acid every day except the day of the methotrexate. You might also need to reduce your dose a little as not all the methotrexate by mouth is absorbed.
Have a look on the NRAS website for advice about fatigue - it's really common especially if you're having problems with medication, with still having some inflammation going on, or just because you are having to adjust to having a long term illness. Learning to pace yourself seems to be the answer - but I wish I could learn that skill even after many years of trying!
I was on methotrexate tablets for 3 years I was ok. I’m now on the injections as the consultant said we absorb it better as the digestive system destroys some of it and I can now be on a lower dose.WIN WIN as far as I’m concerned. I use a nordimet pen it’s much easier to use than the metoject. So easy and pain free. I would contact your Rheumy clinic and ask to be seen suffering that much is not right. Let us know how you get on.
oliviagodfreyxx I am week 6 and the nausea and diarrhoea has slightly begun with big headaches. Hower I know I see the nurse in 2 weeks and looking to move to the imjection if I can. Also some write on here Folic acid can/could be the cause of nausea. SO worth chatting thro with the nurse.
thankyou, i didn’t think about folic acid so i’ll be sure to mention it & i need to up my drinking water game as i don’t do it enough !! thankyou for your help x
Hi, MXT tablets made really sick so I swapped to metoject. I inject into my stomach (alternating sides each week) - it's not like a normal needle it's in a 'pen' type format - it's really easy to inject and not painful at all. Re the fatigue, I suffered badly with fatigue but as the MXT has started to work it has lessened. I also started to use wheatgrass in my morning smoothie and I think that has helped too. Good luck.
Hiya oliviagodfreyxx & welcome. Sorry you’ve been diagnosed so young, though it sounds as though your Rheumy is considerate. When I first started MTX (over 10 years ago) my Consultant suggested I took mine with meals, my dose then was 15mg so took 2 tablets with meals, breakfast, lunch & evening meal. It helped me but with a new Consultant & increase in dose I started injecting. At 20mg the dose was too high, my liver grumbled, so back down to 15mg I went. I responded well & remained on that dose a good while. Currently, years later, I'm on 20mg but my dose should have been reduced to 17.5mg a few weeks ago, agree at my recent appointment. Sorting it, just need my copy to check if my GP Practice have either not received the letter sent to them instructing them to reduce the dose or nobody’s bothered amending my repeat script list... recent merger with another Practice & my GP leaving has caused issues.
Drinking plenty of water can help, increasing folic acid usually does but if the nausea increases to sickness you must report it to your team. We rarely hear of it here though it is relatively common (usually found when pregnant) but some do have a gene mutation (MTHFR). This means it inhibits how their body processes folic acid. It can be solved by stopping folic acid & replacing it with methylfolate. This may be info overload for you just now but lock it away somewhere just in case if you change to injections your nausea/vomiting doesn’t improve.
Anyway, as others have mentioned sometimes our Rheumy’s may reduce our oral dose when we move on to injections as they go directly into the bloodstream, less of the meds is lost as it does in oral going through the digestive system. Many do find that nausea & sickness is eased even reduced enough not to be troubled much at all. I'm needing an antiemetic at the moment, another tablet to take but it helps.
Frequency of DMARD drug monitoring bloods varies, it's your Rheumy's preference. My Rheumy chooses every fortnight for the first 6 weeks on a new med then every month if all is well after the initial ones. I still have my bloods taken every month, usually by a nurse at the Practice but due to recent mismanagement I've needed to request a blood form & have them taken at Pathology in the main hospital in the next town.
Managing fatigue can be difficult, though the hope is once you’re better controlled with manageable side effects that will generally ease. We have mentioned the Spoon Theory before but not recently, usually to help others understand the fatigue autoimmune diseases can cause, but you may find it helpful butyoudontlooksick.com/arti...
I hope you do improve, you really should be enjoying life at your age not burdened with RD, you'll find your way I’m sure. I also hope you enjoy being here with us, we're a happy bunch in spite of everything! 😊
thankyou for your reply i appreciate it a lot, people on here have been really helpful and it’s comforting to know i’m not alone!! thankyou for the spoon theory i’ll make sure to show my friends and family, it’s really helpful x
I was diagnosed 10 years ago and started off on 20mg tablet which made me very sick for 2 days and migraines on 3rd day. 1 Folic acid tablet 4 days later,
My rheumy then reduced dose to 15mg table which helped, however the nausea still existed but not as bad as when I was on 20mg.
A few years ago I was given the injection, but still on only 1 folic acid per week. My sickness improved, and meant that I was only poorly for 1 day.
Over a year ago my rheumy upped my folic acid to 6 days a week and again the sickness improved.
9 months ago I asked if I could reduce my mtx to 12.5 and the rheumy agreed, so far so good. The sickness is mild and I still have fatigue but I don’t lose 1-2 days a month, just through taking the drugs.
I have to add though I am pretty stable and one of the lucky ones suffering very few flares.
Obviously everyone is different but listen to your body and talk to your rheumy.
I believe the best thing for me was, moving over to injection and taking folic acid 6 days a week.
Like everyone else advised , injections seem to be a great option .
I was diagnosed 17 years ago and was put on methotrexate. I am still on the same drug 20 mg a week and used to suffer twice a week due to the side effects - cramps , headache , diarrhoea etc .
Moved to injections few months ago and life quality has improved significantly. I still need to rest but pre injection was real bad . So nothing to complain .
I eat a starchy carb loaded meal and take the injection on Friday night / Saturday night . Sleep and drink loads of water all through the day. Stopping alcohol also helped .
Fatigue is a different ball game altogether - still don’t have mechanisms to deal with it . I sleep and rest as much as I can and stopped feeling guilty and feel great after a 1 hr nap .
I feel the need to express how good and life changing MTX is to many RA sufferers, I've been on MXT for 20 years and have just been discribed as in remission from RA by my consultant, I take it in conjunction with a biological medication, there are thousands like me who tolerate MTX without a problem, probably more RA sufferers take it without any problems than those that do have side effects, the only difference is those with no problem don't feel the need to flag it up, my worry is some sufferers will have preconceived opinion before they give MXT a fair trial.
unfortunately for me it hasn’t been very ‘life changing’, it took me a while to actually start using the drug as i was very apprehensive and unsure because of how bad the reviews and side effects had been. i am willing to give the injection a try but mxt in tablet form isn’t for me, it’s coming up to 10 months taking it orally and yes my inflammation has decreased but it isn’t worth how rubbish it makes me feel both physically and mentally, hoping the injections are more tolerable for my stomach/sickness
I changed to injections and folic acid each day except methotrexate day,it has helped with the nausea and I don't feel so I'll on them. Hopefully you can have them and you feel better xx
I couldn't cope with the side effects of Mtx in tablet form and refused to go to injections as it was only the nausea that would be different. For 3 days after each dose, i.e. 3 days each week, I felt not only nausea but also had brain fog, fatigue and after a few months depression too. I guess I was not prepared to give up 3 days out of each week.
I know it is a wonder drug when it works and can be tolerated.
i hope the injections work better, i have been feeling my mental health get worse and the brain fog AND fatigue so i’m kinda stuck on what to do.. my consultants haven’t been as helpful as i’d of hoped. i just feel very down and tired and achey no matter how much rest i get. i’m a very picky eater so i buy my meals before taking my mtx in tablet form and because i do it over two days it gets quite expensive, i’m a 19 year old on minimum wage this shouldn’t be adding to my costs every week !!
Perhaps you need to call your specialist nurse and explain that you are struggling and it is affecting your mental health. The Rheumy department should react to that. Also see your GP. Personally, I think your meds should be reviewed - but I'm not a doctor....
thankyou, i have a GP appointment next week and then an appointment with my consultant the week afterwards.. it’s just annoying having millions of blood tests and them coming back fine & then nothing being done about it
You have to be very assertive and strongly argue the case for a full review, because that much disruption to your life is not acceptable when there are alternative drugs to try.
Olivia, could be worth your while to google all you can about COX-2 inhibitors, of which methotrexate is one. Knew a girl who had to list everything she ate from 16 years of age and mark those items which worsened her condition. Time consuming but she said it was worth it. Always remember, please, that everyone is different.
Hi Metoject is brill you don't even see the needle just a press of the button it clicks wait for 5 second remove, easy peasy breath, sigh of relief then "just what was I scared of"!!!!!!!!GO FOR IT.
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