Severe mouth ulcers

[LRM001]

I was diagnosed with GPA in March and have been undergoing treatment with steroids and rutixumab Infusions (last one in August) and next one pla ned for Feb 2025. I have as a result of the illness suffered with a very sore tounge and ulcers which come an go. I was given a 30 day course of Nystatin, which has done very little to resolve this issue. Does anyone have any advice on how I can calm this down, as I've put up with it for so long with no improvement. Many thanks Lee

[PMRpro]

You have told your specialsit about the mouth ulcers - it is one of the things you must report when on rituximab.

Could it be oral lichen planus which can manifest as sores as well as the more usual lacy appearance? RItuximab can also cause that.

[LRM001 in reply to PMRpro]

Thank you so much for your reply and yes, I have told my consultant about the issue hence why he prescribed nystatin oral medication which hasn't really helped.

[poppet2]

Are you taking folic acid? I remember when I was getting similar problems my consultant increased my folic acid from once a week to five times a week which seemed to calm it down. Now my steroids have reduced I just take it twice a week and I am much better. Hope you find something to help.

[LRM001]

Thank you for your reply, it is really appreciated. I do not take folic acid and have never been prescribed to do so. I am now completely off steroids, however the ulcers and sores were also present when I was on prednisolone. Glad your able to now manage your issue and thanks again for your support. Best regards Lee

[Wasimps]

Hi Lee,When I was first started on rituximab in February this year I had mouth ulcers and soreness. I tried loads of different meds but nothing helped. However, someone recommended Apiprodent gel which amazingly cleared them up in a few days, absolute godsend. I bought it on Amazon it was about £14 but well worth every penny.

[LRM001]

That is really useful to know, and cannot Thank you enough for the recommended gel. I'll order some today and will let you know how it goes. Best regards and have a wonderful Christmas. Lee

[Wasimps in reply to LRM001]

Lots of helpful suggestions, hope you've now got some relief and enjoyed your Christmas dinner 😊

[LRM001 in reply to Wasimps]

Some great suggestions and post speaking with my consultant at Addenbrooks they have put me on a 3 part mouthwash which consists of nystatin, bethamehasone and doxycycline. Still slightly sore, but I did manage to taste some of my Christmas dinner thanks you 😀 Now have the flu and chills....what are the chances. Best regards and hope you have a good New Year.

[Pompey3]

I had horrendous large mouth ulcers on Sirolimus and my consultant prescribed Betamethasone soluble 500 micrograms (attached photo) - you place the pill onto the ulcer and it fizzes and tastes yummy. Cleared them in 24 hours. You could try a GP or hospital team to get a prescription. Good luck as mouth ulcers suck. PS I have GPA

Photo of Betamethasone

[LRM001 in reply to Pompey3]

Thank you so much for your message and I have been in contact with my consultant at Addenbrooks today and have managed to get a prescription which I will collect tomorrow. I have had these in the past as part of a 3 part mouthwash which included nystatin and doxycycline. It did offer some relief, but will try the Betamethasone on its own to see if that helps...it would be so nice to taste my christmas dinner at least. best regards Lee

[Pompey3 in reply to LRM001]

I’m hoping it works well for you and great to hear your consultant was so responsive. All the best.

[ZiggyDiego]

my ulcers were so bad pre gPA diagnosis I had a tongue biopsy to exclude oral cancer. That was in 2016 and I was diagnosed with lichen planus and told to do a steroid mouthwash. Since then I had a lot of treatment and the ulcers would return every now and again when I was flaring. Last year they got bad again and I had difflam mouthwash prescribed which was very helpful. More rituximab infusions seem to have settled it all again.

[suffolkgirl]

The best treatment I've found for mouth ulcers is Diflam spray.