mouth ulcers

[HazeBlue]

anyone have mouth ulcers on tongue whilst taking hydroxycarbamide ?

I have ET jak 2

Painful mouth ulcers on my tongue. Any suggestions how to treat ?

Thanks Hazel

[krotsida]

I brush my teeth gently 3 times a day within half an hour after each meal, igluting the cums and tong, no more ulsers, I hope it will work for you also HazeBlue.All the best.

[Cat1001954]

hi get them on my inner lips my haemorrhage. Gave me mouthwash to help

[Cat1001954 in reply to Cat1001954]

my heamatologist sorry for typo error

[katiewalsh]

Hi. The following has worked for me. Rinse your mouth with a solution of 1 teaspoon salt, 1 teaspoon baking soda & 16 ounces of water. Do this often during the day & try & swish it around for awhile. Use a gentle toothpaste & toothbrush. To prevent them, I’ve found if I take a big swallow of water immediately before putting the pill in my mouth & then swallow it with a few big swallows of water, I don’t get the mouth sores. Good luck. There are also prescription rinses if nothing else works. Katie

[Geminimumof5]

Hi, common with low B12. Have a boost with supplements. Avoid sugary and acidic foods for a while 😊

[RazB]

hi, yes I get them and have a mouthful at the moment so your post is timely for me! Sorry you suffer with them too, it’s painful and horrible. Good tips above, I’ll definitely try the mouth wash suggested by katiewalsh. Good luck x

[Denman23]

my husband suffered terribly with mouth ulcers when he first started on hydroxycarbamide, he used to gargle salt water but if you can bear it stick with it because it does go away eventually. Hope you get through this phase soon HazeBlue.

[Minify]

Hi HazeBlue,

I got mouth ulcers on Hydroxyurea. I found Lysine worked well to both treat and prevent. To treat an active sore, I took 1000mg 3x day. Maintenance dose to prevent was 500mg/day.

They are miserable! Good luck with finding something that works for you!

[Cokopops]

Hi. Very common with taking hydroxycarbamide. Your haematologist can prescribe mouth wash that does the trick quickly.

[socrates_8]

Hey Hazel...

I am just gargling w/ BiCarbSoda & finding that it really does help...

Best wishes, mouth ulcers are nasty things...

Steve

[Wyebird]

Yes but not often. My worst experience was when I had 5 simultaneously.

Luckily enough apart from those 5 they didn’t really bother me.

I still ate🥴!

Try salt water.

[sbs_patient]

I have PV and was on HU for more than five years; no mouth ulcers, but serious ulcers on the backs of my hands and black fingernails. A dermatologist advised me that I was having an allergic reaction. I am now on ruxolitinib (Jakafi) and doing well.

[hunter5582]

Mouth ulcers are a common HU adverse effect. The ulcers can be quite painful. I experienced a series of open bleeding ulcers, a return of canker sores that had been absent for twenty years, apparent thrush, and a severe dyschromia of the tongue that appeared like leukoplakia. It looked like I had a snowball in my mouth. This continued at a very low dose. The adverse effects continued until I discontinued to the HU. There was a permanent change to the surface of my tongue (geographic tongue).

There are some things that can reduce the adverse effects as others have suggested. You will have to decide whether this makes sense to try or whether what you are experiencing is an unacceptable adverse effect. Some of us simply cannot tolerate HU. Fortunately, there are other options to treat MPNs.

I have done much better on the interferons (Pegasys/Besremi). They have been easier to tolerate and much more effective. Note that we all respond differently to each of the treatment options. Some can benefit from/tolerate one but not the other.

Suggest you review your treatment options with a MPN Specialist to ensure case-specific consultation.

Wishing you all the best.

[Scrollernut]

my doc recommends soda and salt wash as well when my mouth is just sore. . I also swish diluted hydrogen peroxide once in awhile as well. Both helps. Good luck. They are painful.

[russkatt]

I have found L-Lysine helps a lot. Research it and decide for yourself, but it has helped me greatly.

[Murdoch01]

all the time HazeBlue, 3 in the last 3 months and very painful too xx

[Lucy2022]

I have a family member who is on HU and has a cup of plain yogurt when she takes it. This was recommended by her doctor because the plain yogurt can help prevent mouth ulcers. She’s never had an ulcer and has been on HU for a few years. I’m not sure the mechanism that makes the yogurt help, but it could be the good bacteria in yogurt. If you try this make sure the yogurt is plain and not fruity/additives!

[Plate]

I will give you my 2 cents as a retired dentist. Using warm salt water rinse, keeping good hygiene like brushing and flossing, and at night you can just lightly coat your mouth with milk of magnesia. Do not let HU stay in your mouth more than a second. I shake out my dose in the bottle cap, throw it down and drink a glass of water that I already have in my hand, then brush my teeth. So far no ulcers! Also, you should probably stay off citrus drinks and fruits and spicy food . Chocolate can also cause ulcers in some individuals. The prescribed mouth rinse, Chlorhexidine, will cause permanent discoloring of your teeth if used longer than four weeks. The last thing that causes these aphthous ulcers is stress, so be kind to yourself and meditate. I hope these tips can help you.

[ChillyAsh34 in reply to Plate]

I got them a lot ,but now I fill my mouth with water pop my hydroxycarbamide in and follow with more water no ulcers for 6+ months also salt water once a day to sterilize mouth