bad mouth sore

[Ggrana3192]

Hello friends, I was wondering if anyone here with PV has had mouth sores and how you’ve gotten some relief. I’m suffering terribly over a week now , I’ve tried mouthwashes , honey and tea bags, still in so much pain . Anyone on Besremi experience this?? I’m taking 450 mcg.

[Cja1956]

I have post Et Mf but I get frequent, painful mouth sores. At first I tried over-the-counter solutions but none of them worked. My primary care doctor prescribed Triamcinolone dental paste. It’s a miracle drug. You apply it with a cotton swab to the affected areas and I feel better immediately. It’s very sticky so I use it at bedtime.

Good luck.

[Ggrana3192 in reply to Cja1956]

ok great! Thank you , I will ask my doctor for it

[Trocken]

my haematologist gave me Gelclair sachets to try, it’s amazing, clears them up in days! It’s expensive but my gp’s we’re happy to continue prescribing as you need very little and it lasts ages!

[Ggrana3192 in reply to Trocken]

thank you for your advice, I’m waiting to hear back from my doctor

[ConniesDad]

I used to have terrible mouth ulcers and my dentist referred me to a dental/oral surgeon at the local dental hospital. She prescribed Diflam (Benzidamine) oral rinse which contains a mild anaesthetic to provide instant relief , which works well. She also prescribed Betamethasone steroid tablets to dissolve in a teaspoon of water and use as an oral mouthwash at the first sign of an ulcer developing and then 4 times/day until it has gone. I used to have ulcers that lasted 2-3 weeks and after using the Betamethasone they are much less severe and clear up within a couple of days.

I used to have the ulcers before I was diagnosed with MF and before starting any treatment. I believe that the ulcers were in some way connected to my MPN and the oral surgeon kind of agreed although there is no firm evidence of that. I had a stem cell transplant in June this year and to date haven’t had a single ulcer since. !!

[Ggrana3192]

I’m so glad to hear your sct went well and things are going great for you . I love hearing news like this ! Thank you for all your help I will mention this to my doctor when he gets back to me.

[hunter5582]

I did have mouth sores when I was using hydroxyurea. Two types actually, open bleeding ulcers and canker sores. This is one of the reasons i cannot tolerate HU. My dentist recommended an oral get , AO ProVantage, which did help.

I have had no oral issues on Besremi. However, Besremi certainly can have adverse effects.

These Besremi oral adverse effects are found in the literature

Sores, ulcers, or white spots on the lips or in the mouth drugs.com/sfx/besremi-side-...

Infections and infestations: oral herpes, herpes zoster, oral candidiasis ema.europa.eu/en/documents/...

Suggest a proper follow up to get an accurate diagnosis about what you are experiencing. The oral sores could have a number of causes. Proper treatment will depend on a proper diagnosis. This will require consultation between your MPN care team and an otolaryngologist or possibly a dentist.

Please do let us know what you learn. hope you find relief soon.

[CGRed]

Hi there, many thanks to everyone posting here, some great suggestions I'm going to raise with my consultant.

I started my PV journey in April 2021 and the mouth ulcers/canker sores really only took hold 3-4 months into my treatment.

I have only recently started on Interferon so put the ulcers down to the venesections and daily aspirin.

I find when I have a breakout I need to avoid hot drinks, spicy foods and treat them with anbesol.