Mouth ulcers

[Pamak]

I have a question to other RA people. I know methotrexate can cause mouth ulcers and have had the odd one but this time its gone bananas with inflamed mouth as well as the ulcers. Can anyone please give me a cure/relief?

Many thanks

[bubblyalex]

I’m lucky and don’t have any. I would def call your rheumy for help.

[Hidden]

Mouth ulcers are a nightmare to cure my husband has suffered for years and has been to hospital for treatment and nothing helps 🥺sorry it’s very individual. I would contact your team it’s worth mentioning

[helixhelix]

Are you on MTX tablets or injections? I was on tablets to start with and after a couple of years I suddenly got an explosion of ulcers. Upped folic acid, which helped, and endless salt water gargles, which also helped.

But they only went away when I switched to injections....

[Pamak in reply to helixhelix]

I’m on injections and take folic acid 6 days a week and feel awful. I’m due an injection tonight

[oldtimer]

Really sorry to hear your troubles, I know what it's like. I presume that you already take folic acid six days a week?

I found that keeping my mouth scrupulously clean helped with the pain. I cleaned my teeth carefully with brush and interdental brushes, then rinsed with mouth wash frequently. I used Orobase to give some protection (used for stomas so it sticks to mucus membranes like the inside of the mouth). I did try local anaesthetics, but they stung and didn't last long.

But you need to let your medical team know what's happening -and your blood tests are up-to-date I hope too.

[Pamak in reply to oldtimer]

Thank you so much for the information. The local anaesthetic gel really stings as you say. Always thought it was meant to soothe.

[Dobcross1]

Hi. I'm on 25mg MTX injection and did get some ulcers. I started taking Lysine amino acid tablets (from Holland and Barrat if you're in the UK). I don't know if it was that or just that I got used to the MTX but haven't had any for ages. If they're really bad though I would mention to your Rheumatology team. Good luck and I hope they clear soon.

[Fruitandnutcase]

My mouth gives me grief every now and again.

I’d say to definitely cut out sugar in every form, I also find a good quality sea or Himalayan salt rinse works well, especially last thing at night.

I sometimes use Gengigel a very gentle mouthwash and I use a toothpaste that has nothing like SLS or fluoride in it that might irritate my mouth - I like Himalaya Botanique from Amazon. It’s a horrible problem, amazing how miserable mouth ulcers can make you feel.

[Pamak in reply to Fruitandnutcase]

Thank you for the advice. You’re right about how awful they make you feel. I feel really awful at the moment and can’t see it getting any better .

[rounder]

I have had crops of mouth ulcers in the past when on methotrexate and sulphasalazine, the rheumatology team advised taking a break from the meds to give my mouth chance to heal. They recommended a mouth wash but I can't remember which one, sorry. They did give me a steroids shot to cover the period off meds (about a month I think).

I think a phone call to the rheumatology team might be useful for advice. Hope they settle soon, it's miserable.

[Lizard28]

I use Diflam Spray, it has a long nozzle and if you can spray them when you first get them, it helps, also let’s you eat a bit better as it really does numb them.

[Brushwork]

I do get them from time to time on Metoject. They were much, much worse on tablets and Leflunomide caused severe lesions. So, now I take a calcium and VitD tablet every day (no idea why this helps, but it does). Also regular salt water washes.

Hope you get some relief soon, they do make life miserable.

[Hidden]

I do get some but I think mine tend to be when I’m run down, which seems to be all the time at the moment. I never thought about MTX possibly being a cause.

[Otto11]

I used to get them constantly 30 or more at a time & large too. There was a name for them which I now forget. I was referred to the dental hospital who prescribed Adcortyl in Orabase. It’s the only thing that helped mine. A steroid based gel that stuck to them.

I hope you get some relief soon x

[Andstretch]

I'm on the 15mg methotrexate injection (for just over six months now) and have had some awful mouth ulcers and also the corners of my mouth have been very sore and cracked too. I got some Bonjela from my local chemist that gives relief from the ulcers and Zovirax (which l had to order on Amazon) which worked well for the corners of my mouth. Speciaist nurses have also suggested l increase the folic acid from one a week (something l queried after seeing so many on this site take every day but injection day!) to every other day, which will hopefully help with the general 'blah' feelings for two or three days post methotrexate! Wishing you well and hoping you're feeling better soon

[Pamak in reply to Andstretch]

I take folic acid 6 days out of 7. This is the worst I’ve been and it really gets you down. Have bought some iglu gel and sls free toothpaste to see if that helps. Also getting some gentle mouthwash. I’m meticulous with my teeth and mouth so am horrified this has happened.

[Ninaseven]

I sympathize got them terribly while on methotrexate. I was vacationing in France and got a outbreak so bad I couldn't open my mouth as they were on my jaw bone and down my throat. I went to doctor there. He took a picture with my phone and told me to send to RA consultant. In the meantime he put me on antibiotics and a mouth rinse. After my RA doctor saw photos he took me off the methotrexate and put me different drug. Haven't got any of the ulcers since. I was taking the folic acid. I had gotten a few here and there but was able handle but that episode really convinced me that it was time to change. Good luck as there are so many other drugs to help you shouldn't have to suffer from side effects. Suffering from the daily grind of RA is enough to deal with.

[99Michelle]

Try Difflam mouth wash, it really helps, you can buy it over the counter or get it on prescription

[hatshepsut]

Difflam every time!!!

[Mumcon]

I’m bothered by this too I have mentioned it to my consultant before but he did t do anything I seem to get them every couple of months and it does make you miserable I’m on Methojet injections,mine’ s come back in the same place all the time right on top of the roof of my mouth I use igloo and mouthwash and interdental brushes, but as I read someone else’s post I think I will take a photo next time to show him I hope you get ease x

[marigold54]

If your ulcers are giving you that much discomfort get your RA consultant to have a look. If that is too long to wait, go to the GP. I had one a few years ago on the side of my tongue that didn't feel or look like a normal ulcer. I had an appointment with my consultant comin up anyway and showed it to him. It was horrendous it was red and yellow, about half inch long and was swelling INTO my tongue in a cone shape the consultant said he'd never seen an ulcer like it. He sent me to another hospital for a biopsy. I thought they'd take a little bit from the ulcer. Instead they cut my tongue open from back to front. They needed to get an idea how far in it had gone. It was 3/4 of an inch deep. They gave me antibiotcs and it eventually healed about 6 weeks later. The result came back, it was the herpes virus ("what we get ulcers and cold sore). Sorry for the long winded reply but i want to show you how serious it can be. Get it checked

[Nanna71]

Hi, had a few at the beginning but salt water rinsing eliminated them and had no more even after MTX dose increased to max 25mgs orally. Two years into the medication, maybe more. And I take other meds as well. Hope to be helpful.

[BonnieG123]

When I was on MTX, the second I felt something in my mouth I was rinsing with Listerine (purple) it’s strong but kept them at bay. If yours are bad check with the pharmacist for Gly-oxide another good healer. Best wishes they go away soon.

[Bethany02]

For mouth issues due to chemo we use caphasol it's very good but not pleasant and you have to follow the instructions meticulously

[texaslady]

When I had them my doc prescribed "Valtrex" (not over the counter). It worked for me. Got rid of them quickly.