Very sore inner lips, on Methotrexate 10mg weekly. Any ideas what will help my very sore mouth? (my tongue is okay.)

[Biz12]

Hi everyone, I haven't posted for a while, as I my joints have gradually improved on Methotrexate 10mg weekly, after about 9 or 10 weeks. Now my inner lips have become very sore, and I get a burning discomfort, when trying to eat or drink anything that is even slightly warm. I may have been slightly low on fluid one day beforehand, but I'm well hydrated now. Any ideas as to what might help with this? My last haemoglobin was very slightly below normal. I'm taking folic acid 5mg every day, apart from Methotrexate day.

[Wishlady]

Hello biz,I'm on 20.mg they started me off on 15 mg of methotrexate. I have stills desease and they are weaning me off steriods. I have experienced sore mouth get worse at times causing discomfort when I eat. I take folic acid 3 times a week. I also have been taking antihistamine tablets. I've found that the longer I've been on methotrexate the symptoms have decreased .

I hope this helps.

Best wishes.

[Biz12 in reply to Wishlady]

Thanks! That's reassuring.

[gailboddy]

Have you had your B12 levels checked as sore mouth is a symptom of low B12 ... Just had mine checked and need to have a course of injections

[Biz12 in reply to gailboddy]

Thank you for your helpful suggestion.

[gailboddy in reply to Biz12]

Your welcome x

[Cat-E]

Are you on oral mtx? I haven't suffered with this but think it's a side effect and possible injections rather than tablets might help, talk to your rheumy team 😀

[Biz12 in reply to Cat-E]

Thanks, I will contact the Rheumatology team.

[ruth_p]

You could try using some Corsodyl mouthwash - the medicated one not the daily one. It doesn’t taste great and leaves a weird taste in your mouth but it really helps me with any mouth ulcers I get from the mtx. I’ve found the original one better than the mint ones.

[juliea793 in reply to ruth_p]

Can stain the teeth but excellent mouthwash

[ruth_p in reply to juliea793]

It can but if you only use it when you need to it’s fine.

[Biz12 in reply to ruth_p]

I have some Corsodyl, so have started it today. Thanks for the advice.

[Moomin8]

Hi,I'm sorry you are feeling so uncomfortable. Have you asked your rheumatology team about increasing the days which you take your folic acid?

I also agree about asking for injections, as they are kinder to the body - if mtx could even be described as 'kind'! 😜🤪

[Biz12 in reply to Moomin8]

Hi Moomin8, Thanks for your reply. I actually take folic acid 5mg 6 days a week. I had a blood test on Thursday, two days ago, do I will ask the team if any deficiency showed up, and ask for advice from them about my sore mouth.

[Moomin8 in reply to Biz12]

I'm wondering if it could be a viral thing, if not simply a reaction to mtx 🙄🤔

[Oxfordboy2]

I’m afraid I don’t have an answer for you but though after reading your experience how we all suffer different side effects.I have been on MTX 15mg for nearly 3 years.It wasn’t until this last year that I started mouth problems.Mine effect my upper gums and roof of my mouth and this happens regularly,surprisingly never my lower gums.This makes eating and teeth brushing painful but I haven’t found a way around it.Good luck and hope you have better luck than I have.

[Hallwood in reply to Oxfordboy2]

Folic Acid tablets!

[Oxfordboy2 in reply to Hallwood]

I should have added that I take 5mg folic acid on 3 separate days.

[oldtimer2]

I had lots of problems with a sore mouth on methotrexate, even with the injections. I found orobase ( which you can buy without a prescription) the most useful as well as keeping my mouth scrupulously clean - no bits of food in the crevices anywhere.

[marie66]

Hi I struggled with mouth issues too. Corsodyl mouth wash did help heal quicker and Bonjela was good for ulcers but honestly moving to injection stopped it! M x

[flowerlover]

I use ultraDex mouthwash (free from alcohol & chlorhexidine) You can use it unflavoured or add the flavouring if you want a strong taste - it's supplied separately. I can't stand the taste of normal mouthwash. I find it to be good

[Hallwood]

Endorsing comments about Folic Acid, I take it every day apart from methotrexate day. Without keeping this up, I get mouth ulcers, sores under my tongue and inner lips. It's such an easy fix for avoiding adding to our suffering!

[Mall]

I take folic acid 6 days a week as prescribed, each day except methotrexate day. I am on 25 mgs by injection. Folic acid helps with side effects . Speak to your rheumatologist.

[Biz12 in reply to Mall]

Thanks for your advice Mall. I do already take Folic acid 5mg every day except Methotrexate day. So far it has helped, until the last few days when my sore mouth really flared up. I will ask the specialist nurses for advice too, on Monday.

[welsh12 in reply to Biz12]

There are specialist mouth wash and gels you can use if you ask in pharmacy

[Biz12]

Thanks so much.

[LGLLfighter]

How did you arrive at 5mg of folic acid every day except your MTX dose day? My wife takes 1 mg of folic acid every day except her MTX dose day. You are taking 5x her dosage of folic acid. Is there a reason for this folic acid dosage amount? Could this high folic acid dose amount have an influence on your mouth & inside lips sores? (I may be totally off base but just sharing info here.)

[Biz12 in reply to LGLLfighter]

I take 5mg Folic acid daily, except on Methotrexate day, because that's what the Rheumatology team recommend. It does mostly control the nausea. Also, my folate was on the low side when first tested.