Mouth Ulcers

I've had ET for a couple of years, take 1gm Hydrea daily. I am getting horrendous mouth ulcers, often 3 or 4 at a time. The Haematologist has tried lowering my dosage, but my blood count goes up, so that's not an option. My zinc and B vitamin levels are normal. I have every medication on Boots' shelves to combat the ulcers, and some stuff from the US which is very effective for pain relief, but what I really want is to prevent them. Has anyone managed to do this?

8 Replies

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  • Hi,

    I had similar problems with mouth ulcers when I took hydroxycarbamide. They were bad enough that I opted to switch to interferon!

    No useful advice I'm afraid but I just wanted to let you know that you're not alone!

    Jo

  • Cheers, Jo! I do feel a bit of a wuss complaining about something relatively trivial, but it makes me so miserable, so it does help to know I'm not alone!

  • Hi, yes I had this too on Hydroxy. I tried every mouth wash, the hospital recommended Difflam and my dentist Peroxyl but I found warm salty water just as good. My consultant explained that the Hydroxy changes the tissues on the inside of the mouth. I eventually got too many other side effects and had to come off Hydroxy and am now on Pegasys which at the moment is not working as well at lowering my counts as Hydroxy did. I hope you find some relief soon, best wishes, Frances

  • Hey Bakerlite... :)

    Sorry to hear that you are struggling w/ this nasty little side-effect.

    I used to have many more mouth ulcers when I too was on HU (500-1000mg d), however, I am now on Ruxolitinib, and I do still have them upon occasion. Generally, I find that gargling w/ Soda-bicarbonate is useful. It has helped me in the past...

    Incentally, I started out as ET but am now MF.

    Hope it can work for you too...

    Best wishes

    Steve

    (Sydney)

  • corsodyl mouth wash

  • Mouth ulcers are awful things to have to tolerate. I was surprised to find that a teaspoon of good organic coconut oil dissolved in the mouth cure my ulcers very quickly. You don't need to swallow, remove the oil after a minutes time into a tissue. Do try it. I hope it works for you.

    Jan

  • I found Gingigel mouthwash works quite well if used regularly.

  • Hi.I read somewhere that Bendedril and liquid milk of magnesia works.

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