Question for all the MTX warriors: Am a relative newbie... - NRAS

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Question for all the MTX warriors

Wobbies profile image
20 Replies

Am a relative newbie to MTX, only having taken it for 5 months. Although I take my 15mgs by injection, I still have horrible stomach issues for at least 2 days after the injection and feel really rough. Have picked up from other posts that I should keep well hydrated and eat small amounts, although I have no appetite. I take it after my shower in the morning, would there be any advantage to taking it at night or all suggestions gratefully received? Do the side effects diminish over time?

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nomoreheels profile image
nomoreheels

I also inject (17.5mg) after my shower, always have. It's my 11th year injecting & 8 on 5mg folic acid 6 days. I still have little appetite the day after & just graze, I always make sure I have an avocado, olives & gherkins in, or my go-to when not hungry, peanut butter on toast. I drink lots of water though, it helps. My first Consultant advised against taking MTX or injecting in the evening in case side effects, nausea mainly, disrupted my sleep.

I have had antiemetics in the past when I go up to 20mg, both metoclopramide & prochlorperazine, the latter is more effective for me. I'm much better side effect wise on 17.5mg though. Maybe in a similar way 15mg is a little too high for you if you take maximum dose folic acid?Anything with ginger in it also helps my tum when it's upset.

Hope some of this is helpful?

Wobbies profile image
Wobbies in reply to nomoreheels

Thanks for that. Am only on 5mg folic acid one day per week. So, an increase may help. Am expecting rheumy appt. in July so will ask. Will also take your tip about grazing and not worrying about necessarily eating too sensibly that day. Mind you my go-tos are natural yogurt and fresh fruit, so perhaps just stick with those for the day. Also perhaps try ginger tea. Very helpful.

LoneEra profile image
LoneEra in reply to Wobbies

Please call or email your rheumy team about the folic acid...don’t wait for July 🙂

nomoreheels profile image
nomoreheels in reply to Wobbies

As LoneEra says, best to contact your Rheumy team as you're only taking one folic acid a week, July is a way away. It's the first thing to try, increasing the days you take it when the more common side effects are bothersome.

Boxerlady profile image
Boxerlady

You should definitely ask for more Folic Acid - I would be asking for it NOW!

I think that for me the Methotrexate kicks in after about 6 hours and I feel slightly "foggy". I don't have tummy issues now but I do get the "hangover" for a couple of days.

I usually inject in the morning but forgot last week so did it at bed time. I'm planning to do that again next week as I THINK that it made the second day feel worse but I want to see if that happens again as in two weeks time I'm working on the second day....

I'm probably over-thinking it as some people on here have said that it changes from week to week, often for no apparent reason. 🙄

Wobbies profile image
Wobbies in reply to Boxerlady

Thanks to all of you. I have messaged my rheumy team after your posts have given me the confidence to do so. You are all invaluable to me with your knowledge and helpful advice.

nomoreheels profile image
nomoreheels in reply to Wobbies

It's what we're here for... to help & support one another. I'm pleased we gave you confidence to contact your Rheumy team. More so I hope the increase solves the problem. 😊

springcross profile image
springcross

Hi Wobbies. I'm on 15 mg MTX via injection and was told to take 5 mg Folic Acid every day except MTX day right from the day of diagnosis. Taking just 5 mg per week may be what is causing your stomach issues for a couple of days after. Can you ring your Rheumy department and ask if you can increase it to six days per week? I do my injection in the afternoon about 4.30 ish and I find that works quite well for me and I do drink lots of water on the day and day after but even so, I still feel quite drained the day after.

Helen-NRAS profile image
Helen-NRASModerator

If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

Wobbies profile image
Wobbies in reply to Helen-NRAS

Thank you

charisma profile image
charisma

I found that eating stodge helped on MTX day eg porridge or pizza. Best of luck with finding suitable coping strategies for your own body. 🌸

Wobbies profile image
Wobbies in reply to charisma

Funny you should say that Charisma but last night after getting really fed up with belly problems, I went for kill or cure and ate fish and chips. That seemed to weigh it down and the nausea went and my stomach felt much more settled. So, perhaps stodge is the answer. Thanks for that - will have stodgy meal next week and see if it works again.

Flor1rence profile image
Flor1rence

Hi I inject in the evening but I'm armed with ginger biscuits plenty of water in the day and anti sickness pills if required. I have folic acid every day apart from MTX day. 😉I hope you manage to get some help from Rheumy Dept x

Wobbies profile image
Wobbies in reply to Flor1rence

Although at the moment I can only message my rheumy department, they always come back to you and are usually helpful, so am expecting good response. Will add ginger biscuits to my next shop. Thanks for that.

Sheila_G profile image
Sheila_G

Hi. I have taken mxt for 19 years now, both injection and tablet form. I have never really had any side effects except being more tired the day after. I would definitely advisevtakibg it at night so that you have a chance of sleeping through any nausea etc. I have taken tablets for many years now and always take them about 30 minutes to an hour before I go to bed. On saying all this, we are all different and it is very much horses for courses. I hope you feel better soon.

Wobbies profile image
Wobbies in reply to Sheila_G

Am finding it really strange that I have side effects as I don't usually. Maybe getting older so system not so tolerant. 😀 The hangover is something that I can cope with but persistent nausea and the sore mouth get to me. However, everyone on the forum has been very helpful and I am grateful for all the advice.

TAkersRASLE profile image
TAkersRASLE

Make sure you are taking a daily dose of folic acid to prevent/reduce MTX side effects. I take 4mg daily and it has made a huge difference.

Wobbies profile image
Wobbies in reply to TAkersRASLE

Thanks

Hello,I recently started on MTX tablets. I am taking them at night but do keep waking up feeling horrendous and about to vomit and really suffered the week I was working nights 🤦🏼‍♀️

I also have horrible tummy pain for days after and don’t feel much better until the next dose is due!

Have been told to split the dose and to take the folic acid six days a week (not on MTX day) but I still really dread taking them 😢

Sorry, not very helpful but you are def not the only one and I hope they have a useful suggestion for you.

Good luck xx

Wobbies profile image
Wobbies in reply to

Oh you sound just like me. Horrid isn't it? Will let you know if I get any help.

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