Mouth/Tongue Ulcers

[Albt4z]

I have PV JAK2+ dx three & a half years. Been on Hydroxycarbamide for a year & a half - 2 x 500mg daily. Since August, every three/four weeks I’ve been getting a very sore tongue which makes eating unpleasant. Anyone else had this?

[Mwalimu]

I have been on HU for 7 years now (currently 1000 mg X 5 days and 500 mg X 2 days + daily 75 mg aspirin). I frequently have a sore tongue and mouth with ulcers from time to time. I control it by using Anbesol liquid. Sallie

[Swede]

Hi, I read somewhere that we should rinse the mouth after taken a tablet. Guess I have been lucky because I have just on a very few occations had sore mouth but never anything dramatic.

[Helpatlast]

Yes I have been on HU over 13 years and in the early years on higher doses did get awful mouth ulcers and tongue sores, I found once I upped my water intake a lot it made a big difference, little bottl always with you it helps with ulcers as well as all the other benefits of water for MPN. Also keeping mouth extra clean and antibacterial mouth washes help too. Hope you get relief soon

[Albt4z in reply to Helpatlast]

Thanks that’s helpful and another reason for me to try harder with my water intake. I’ve been finding it hard to motivate myself.

[Helpatlast]

It can be like that but the more time goes on from diagnosis the more it becomes second nature to do all these things - and the "water thing" makes such a huge difference to how you feel with a MPN do go for it as you will find that and it then becomes a good motivation to keep doing it. All the best

[Ovingite]

Absolutely agree about the need to take in lots of water. I get a sore tongue if I let my water intake slip. I now keep a 1.5 litre bottle in the fridge that I aim to drink twice per day (so 3L per day) and it makes a huge difference.

John

[Albt4z in reply to Ovingite]

Hi John. I measure out 4 x 750 bottles but struggling to drink more than 2. It’s easier when I’m in the office at the computer, but when out & about it’s remembering to carry bottle around. So I bought a 4 bottle wine cooler with a handle so I can take it out with me. The other thing when I’m out is finding a toilet! Also ... has anyone got a routine for cleaning water bottles? Should it be done daily? 🙁

[Fionnuaghla]

Hi

I have been taking Hydroxy for two and a half years, recently increased to 3x500mg one day and 2x500 on the next day so 10 tablets over 4 days. I have started to get mouth and tongue ulcers. I have been rinsing with bicarbonate of soda and salt in hot water which helps but as soon as I stop another one pops up in my mouth. I also looked back over posts here and got Medigel from Poundland for convenience as I rarely keep contents of my baking cupboard in my handbag. I drink plenty of water but have not been actually measuring the amount of late so will have to return to that and maybe rinse after taking the medication.

[Inca]

Hello All,

I now have resorted to 'baby tooth paste',was fed up of every brand I tried making sore tongue and gums worse,now no problems.

Salt water rinse after all meals,then I found a gel to put on ulcers,really good....Amazon.....normal chemists are not very interested.Good Luck ,it's horrid esp eating in company

[grgracey]

Mine I think the ulcer is in my throat...too bad for the side effects