Gum lesions from Hydrea

[dogsandhorses]

I have developed gum lesions from Hydrea. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it. It is also making my gums recede. My dentist didn't have any answers for what to do about it either. Anyone have experience with this, and what to treat it with? I've been using salt water, but it hasn't cleared it up, merely made it a little less inflamed and painful. I also have some dental lidocaine from a prior dental procedure that I am using as needed.

[Cat1001954]

I get sores on inside of my lips I use biotene mouthwash and toothpaste so it does not sting

[hunter5582]

Hydroxyurea can cause a number of oral issues, including ulcers, stomatitis. problems with gums and tongue. Note that ulcers are not necessarily the white type. I had open wounds/bleeding oral ulcers due to HU. We initially reduced the dose to 500mg every other day but the problems persisted. Ultimately, we discontinued the HU altogether. It took about three months for the ulcers to recede and the surface of my tongue was permanently changed (geographic tongue).

Unfortunately, there may not be anything that can be done if the HU is the cause of the oral issues you are experiencing other than to discontinue the HU or reduce the dose. Topical treatment with AO Provantage gel helped to manage the symptom but did nothing to prevent the problem.

Fortunately, there were other options I could pursue. I have responded much better to the interferons (Pegasys/Besremi). The IFNs have been more effective and much easier for me to tolerate.

If you determine that this is a HU adverse effect, it is up to you to decide whether this is or is not an acceptable side effect that needs to be managed. Based on your treatment goals and risk tolerance, you can choose to continue the HU if you determine that is in your best interests. If you determine that it is in your best interests to change to a different course of treatment, then that is your prerogative to pursue.

This is an issue that requires shared decision making with your MPN care team. Hopefully, you already have a MPN Specialist on your care team. If not, this would be a good time to seek a second opinion on your treatment options.

Wishing you all the best.

[dogsandhorses in reply to hunter5582]

Thanks for your thoughtful response.

[katiewalsh]

Hi. There are a few things I do that work. First, mix 1 teaspoon salt with 1 teaspoon baking soda in 16 ounces of water and swish it around your mouth holding it in areas with sores for a few minutes. Repeat this multiple times daily until sores are gone. Don’t use straight salt. Don’t use mouth washes or most toothpastes because they’re too harsh for our mouths. Use something like original Crest. Definitely nothing whitening or tarter control. There are a number of prescription oral medications a doctor can prescribe. Unfortunately I don’t know what they are because I’ve never needed them but others on here have gotten them. Next is how you take your pill. If your mouth is moist before putting the pill in & you immediately swallow it with a lot of water, it should prevent mouth sores from developing. I take a drink of water, immediately put the pill(s) in my mouth & immediately swallow with water a few times. Given how bad your sores are you may need prescription meds to get it under control. Hopefully someone will provide that info. Good luck. Katie

[Polly-PV]

Yes, D&H, I get red inflamed sores inside my lower lip and now have, as Hunter describes, geographic tongue. Commercial mouthwashes sting apart from Oraldene so probably best to make up your own natural mouthwash. I am due to meet, face to face, my new haem in June so am going to explore with him alternative treatment other than HU. I have been taking this for approx 10 years now with the main side effects being fatigue and the sore mouth. We’ll see what he says. Poll x

[Whitehair51]

Most toothpastes have laurel sulfate which can worsen your mouth pain. I use a Jason coconut toothpaste from Amazon that seems to help.

[BrookTownsend375]

Not eating chocolate? are you? I had round red things inside my lower lip. Called Hem, they said "not related to Hydroxy." I stopped the choclolate for a few days and it went away.

[dogsandhorses in reply to BrookTownsend375]

No, no chocolate. Mine are large blood red places that are very sensitive on my upper gums. I'm trying Biotene, and it is helping. This is the second time I've had this happen.