Hi all you lovely people. With big interest i read a lot of your posts and it would be a great help to understand and compare your experience and side effects with my own, if you inform how big/small dose og Mtx you are on.
I am diagnosed with RA and have been on 20 mg MTX week,y for about 6 months. I had at least one whole day with nausea and sometimes headacke. I also started to get sore gums and was bleeding when brushing my teeth. I went down to 15 mg MTX weekly, but still have a day feeling bad - almost like having a horribly hangover. I have lost a lot of weight (about 5 kilos). I still struggle with my gums. My rheumatologist told me to take more Folic acid, and i now take 5 mg the daybefore and after injections of MTX and one in between. Does anyone on the same dose have problems with nausea and sore gums?
I am from Denmark and i apologize that my english is not perfect.
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Nikma
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Hello Nikma and welcome from Denmark - apparently one of the happiest countries to live in, according to surveys. I take 20 MTX by injection weekly. Before that I was on 25mg tablets (rose from 15 mg over 4 weeks after diagnosis) and felt extremely ill on that, with unbearable headaches like the worst possible hangover, and nausea, but unlike a hangover it did not wear off. So they moved me onto 15mg injection (as you absorb more by injection so they lower the dose) and then raised that to 20. I felt totally wiped out so then they told me to take folic acid every day except injection day. It helped to start with but I am back to feeling exhausted again. I don’t have bleeding mouth but yours sounds sore. Poor you. I do have skin problems I didn’t have before. Can you call your hospital? Maybe more folic acid would help? I was also put onto fultium which is calcium and vitamin D as mine were too low. Wish I had a magic answer. Good luck
I take folic everyday except methotrexate day, drink loads of water om mtx day and switched to injections not tablets. Had mouth ulcers on 20 mg, reduced to 12.5, still gives me nausea for up to 3 but better than before. Do you have specialist nurse/helpline to ring in Denmark for advice: seems to me always balance between quality of life and disease control, good luck.
Hi Kerena. Yes you are right, it sometime seems like you have to choose between pest or colera. I do have a hotline to a rheumatologic hospital and i am up and down i MTX dose from 20 to15 to now 17 1/2. I think i will do like you and take Folic acid everyday except the MTX day. Do you have 5 mg Folic acid pr day?
Hello Nikma, Hvordan har du det i dag? Your English is very good. I've been on MTX since 2009, tablets first then injections. I am on 17,5mg. Never any severe side effects. I take Folic Acid every day except on injection day. I quite happily put up with some hours of feeling less well if that means my RA is under control and I can get on with my life. I hope you'll find a regime that will work for you. All the best.
I have just posted on another query about MTX, so if you don't mind I am going to copy and paste ....
MTX has given me my life back. I am on 17.5mg. To keep the side effects at bay I do the following:
1 - moved from tablets to jabs - reduced gut issues
2- have my jab just before I go to bed
3 - 5mg folic acid 6 days a week (just not MTX day) - reduces nausea
4 - approx 4 pints of water on MTX day - this keeps MTX headache away
And a very recent one which I have not posted about before is which brand I use. I need to post something on this at some point. But basically I have tried 2 brands. One makes me feel unwell for 3 days and the other 0.5 day - as in wiped out feeling + nausea. What a difference!
Finally in terms of your gums Nikma, I had terrible mouth ulcers for a number of months when I first started taking MTX. I spoke to a Pharmacist and he said don't bother with all the mouthwashes etc and wasting your money just use saline (salty water) 5 times a day. That is what I did and it solved the problem. At the time the mouth ulcers were a lot worse than having the RA! After a number of months my body got use the MTX and the mouth ulcers now only return if I am run down.
I had no idea there were different brands of Mtx Joy, thanks. Came off hydroxychloroquine because affected sleep & week long nausea & they didnot seem able to source other brand, people were saying was better.
I have not googled how many brands there are, perhaps someone else knows.
I was on one brand and doing fine then the company stopped making it at 17.5mg. I contacted their patient line but needless to say they did not get back to me. I moved on to another brand thinking it would be okay but hells bells it was the pits!! Horrific nausea for a couple of days and feeling wiped out for a couple of days too.
Anyways the first brand I was on started making 17.5mg again and yippee I am back to only feeling wiped out for half a day along with the nausea. Although I still take it easy the day after MTX day as I know if I overdo things that hangover feeling will return with vengeance!
As for HQC, yes I hear Zentiva is better. I have not looked into this as HQC only gave me a minor gut issue. This was resolved by noting what the lovely folk here said about splitting the dose. This then resolved itself after 2 weeks.
Yep zentiva Joy, gave up after ringing advice line, GPs etc, no joy, cldn't find it on list et etc, all switched to cheaper generic brand. More concerned about Mtx as am injecting into myself weekly and have noticed lately starting to get waves of nausea in week as well as 3 days after. Thanks for heads up, will look into.
It was one of the regular folk that post here that told me about Zentiva, but as I say in my case splitting the dose solved my issue.
As for the subcutaneous MTX, it's 3 cheers for Nordimet and a big thumbs down for Zlatal for me. Ironically they are both made by the Nordic Group. The epipen Nordimet needle also appears to be much finer than the Zlatal one as Zlatal hurts but I don't feel a thing with Nordimet.
Hiya Nikma & welcome. Your English is far better than my Danish! I'm sorry you're having such problems but there are some things you can try to help ease them, even make them go away. I've been on MTX 9 years, the first year tablets & ever since by injection. As others have said a change to injections often helps because less of the med is lost as it doesn't go through the digestive system, it goes directly into the bloodstream. This helps ease nausea, or even solves it.
We're prescribed folic acid because MTX is intended to target the cells that cause inflammation, but it can't determine to only affect those cells so also reduces the DNA cells, those which are continually replaced & why we may have mouth ulcers, bleeding gums & other undesirable blood disorders. So, the more we have the more folate we need to replace what's lost. I'm on 17.5mg injections & take 5mg folic acid every day except MTX day. The following day I'm a little more tired & less appetite, both tolerable.
Maybe you could talk to your Rheumy & see if you could increase the days you take your folic acid? Also drink plenty if water on your MTX day, this helps with headaches.
I hope some of this helps & your Rheumy is ok with an increase in folic acid if you decide to ask.
Hi nomorehee heels. ( i wore high heels, when i was yonger, but hardly dont any more) I will start to take 5 mg Folic acid every day except MTX day. I have a place between two teeth, where it keep on bleeding, no matter how thoroughly I brush. I went to the dentist twice about it, but she says to keep on brushing and, as i do, and hse a small brush for between the teeth. I do hope some extra Folic acid helps.
Do you think a softer toothbrush would help, until your gums heal at least & the increase in folic acid hopefully stops the problem. I hope increasing it solves the problem but do make sure you have the amount of folic acid tablets increased on your prescription otherwise you'll not have enough for the month.
Because of foot problems I now have to wear a heel, not too high but not flats. So really I shouldn't have the username any more!
I do use soft toothbrush and i never had problems with my gums before. I hope a higher dose of Folic acid helps and i can any time get a new prescription from my rheumatologist.
I like your user name 😊 I just came to think of my self not wearing high heels as i use to do.
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