Hi everyone. I have been getting mouth ulcers on my throat ( because of hydroxy). Now lost voice 2 wks ago. Doc done blood test no infection

[corrins]

Has anyone else had this problem.starting to get me down. Can't talk to anyone. Lol. X thanks.

[Mazcd Partner MPNVoice]

Hi Corrins, sorry to hear that you have been suffering with ulcers, unfortunately this is a side effect of Hydroxycarbamide, you will, no doubt, hear from lots of people on this forum who have the same problem. The ulcers do seem to come and go and are extremely painful, I know I get them as well, I spoke to my haematologist about it and he prescribed a mouth wash called Difflam which does help with the pain, you should speak to your haematologist and ask if you can have something to help. Best wishes, Maz.

[corrins in reply to Mazcd]

Thank you maz. X

[Little-friend-Susan in reply to corrins]

This is something I have noticed as an effect of Hydroxycarbamide together with digestive problems. My mouth feels as if a layer of cells is missing and my tongue develops sore patches sometimes. I have got used to this over the years, it doesn't affect my appetite! I do use a mouthwash recommended by my dentist to keep my gums healthy as at my age, 70, it is important to look after your teeth.

[Nirbhebe]

Corrins

So sorry for your symptoms. That must be isolating to have no voice. I had mouth ulcers when I first started HU but have not had them for quite some time. They are unpleasant. Wishing you comfort!

EB

[dorotea]

Get in touch with your haematologist straight away corrins - more than likely you will be taken off Hydroxy.

I developed 2 ankle ulcers (instead of throat ulcers), which were terribly painful and was taken off Hydroxy straight

away - so please do see your haematologist . I can imagine how awful you feel. God Bless.

[DENMOOR]

Hi Corrins

Sorry about your ulcers. I go through stages when clear for a few mouths then may get 4 or 5 big ones. Can hardly eat. My haemo says it's my ET that's doing it. Been on chemo for 12 years.

Denise

[corrins]

Thanks for all your advice. It's not the pain that bothers me, it's the fact I've lost my voice for 4 weeks now. Will go back to GP and see what he can do. Thanks again. Love this forum. It puts your mind at rest and you get some great advice.

[bruddery]

Hello there. I too suffer with severe mouth ulcers particularly when they increase my hydroxy - (I take 1500 x 5 and 1000 x 2) I also get a very swollen tongue to the extent that it is difficult to eat. My Haem referred me to the dental hospital and they prescribed Betnesol as a mouthwash - have to admit it works though I still get them but at least it is manageable. Difflam didn't do too much for me, nor did many other mouthwashes that were tried hence the referral to dental hospital. Guess I was lucky to have the referral. Dental hospital had me go for appointments for 12 months and then said anytime I need to go back if things change, I just have to phone and make an appointment. Hope you get it sorted. Good luck.

[DeniseC]

Hi, I also get throat ulcers, which I have put down to the digestive problems caused by all the different drugs I take including Hu. I find that a short course of imperative calms it down and makes throat more bearable as stops the acid reflux which causes the ulcers. Unfortunately only ever a short term fix until the cycle starts again but does give some relief. Gaviscon will help, as will sleeping with the head of your bed raised ( just by 1 house brick or yellow pages). Good luck with it, I know painfully it can be.