Instow1

[Instow1]

dear friends

I have ET and have been on hyroxycarbamide for 4 years Lately my gums have been sore

the Hemo nurse said this was to be expected and to see my DR. Unable to get appointment the pharmacy recommended a spray which does help. Now my tongue is also sore . Haze anyone else experienced this and what help can you recommend Thanks. For any reply

[Fieldsy57]

Hi, I take it that from your name you might be from Devon? I have PV and from Devon and am presently on a Mithridate trial which means a regular trip to Exeter, I am going today. Though this means monthly check ups it does ensure regular face to face appointments where issues like this can be discussed. I am surprised and disappointed you can not get an appointment with your GP or that your Hemo nurse could not recommend something. I have not had this issue but I hope someone on here can advise and I will be interested to see any suggestions as I have only started hyroxycarbamide this year and have heard it can be a side effect. Good luck 👍

[Instow1 in reply to Fieldsy57]

thank you for your reply. Not in Devon. Just our favourite place

[Mirror368]

When I take Hydroxyurea I take with a full glass of water. I swirl some around my mouth, tip the capsule into my mouth and swallow. So far no sores, Eileen

[Instow1 in reply to Mirror368]

’thanks for reply

[hunter5582]

Yes I did have oral issues with HU. Thrush, bleeding oral ulcers, canker sores, and damage to the tongue. The HU turned my entire tongue as white as a snowbank. The only thing that helped was to discontinue the HU. I ultimately switched to the interferons (Pegasys then Besremi) which were more effective and easier to tolerate.

If the issues persist, suggest that you consider a dose reduction or alternatives to the HU. This is something to discuss with a MPN Specialist.

Wishing you success moving forward.

[Instow1 in reply to hunter5582]

thank you Hunter

[Meatloaf9]

I would suggest a visit to your dentist to see if there are any local causes for your discomfort. I have been on HU for a little over 3 years, no problems so far, fingers crossed.

[Instow1 in reply to Meatloaf9]

thanks for replying. I see my dentist frequently so not that I hope to cut down the dosage soon

[georgevanier in reply to Instow1]

I have been on HU for 2 years, I take it with a spoonful of yogurt, followed with a glass of water, no problems so far . Wishing all the best

[Instow1 in reply to georgevanier]

Thanks for replying