Huge sore on roof of mouth: I have Lupus and other... - NRAS

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Huge sore on roof of mouth

Iona467 profile image
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I have Lupus and other things too. Every 6 weeks or so I relapse and this involves having some mouth ulcers and needing to be in bed for a few days. I am on Methotrexate.

I now have a huge mouth ulcer on the roof of my mouth, swollen mouth and glands up. Do others experience this?

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Iona467 profile image
Iona467
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oldtimer profile image
oldtimer

Yes, when I was on Methotrexate I also had huge mouth ulcers as well as the usual side effects of sickness diarrhoea and brain fog. I used mouth wash, orabase gel to cover the ulcers and sometimes a local anaesthetic spray. But eventually my dentist ( local dental tutor) suggested that I changed medication and the change was enormous. They were definitely due, in my case, to the methotrexate.

I have similar and I swear by aloclair mouthwash. It doesn't taste brilliant but it does the trick very quickly. They do a spray too. Also, how much folic acid are you taking? I improved when my dose was increased. If this is bothering you lots, then speak to your rheum or nurse as they may need to look at your dose.

Sending much sympathy because it's rubbish and painful. I wish you better.

Iona467 profile image
Iona467 in reply to

Just one tablet the next day

Eiram50 profile image
Eiram50

I too take methotrexate and suffer from ulcers and a burning tongue. Initially, I was on folic acid the day after taking the methotrexate but now I take it every day apart from the day I take methotrexate. This has certainly helped with the mouth ulcers ( though not the burning tongue!) guess we can't have it all.

Leonwp profile image
Leonwp

Sorry to read you are going through this, i dont have lupus just straight RA and probably secondary sonjrens. I did used to get these ulcers in my mouth particularly the roof but they upped my folic acid doseage and that seemed to sort it out. I hope you find a solution that works for you. Blessings.

Joy_1 profile image
Joy_1

Hi there,

MTX gave me huge painful mouth ulcers.

I spent sometime hunting for a solution and went to my local pharmacist armed with a list of suggestions folk had posted.

He said don't waste your money. Mouth ulcers are quite common when taking MTX because your mouth is not exactly a clean environment so the bugs have a field day. He recommended saline (warm salty water) as many times a day as I liked.

Basically I take my MTX on a Monday. On Wed I feel the first tingling from the mouth ulcers. I then rinse with saline around 5 times for 2 days and that stops them in their tracks.

I found that it was not just rinsing that helped but holding the saline in my mouth for 2 mins each time that did the trick.

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