Mouth ulcers and hydroxy

[Cokopops]

Happy New Year to you all!

Since being on hydroxy, I’ve had ulcers in my mouth and with mouthwash prescribed by haematologist, they disappeared quickly.

Last week, I had a blocked salivary gland, not for the first time and nothing to do with hydroxycarbamide because I had this much before diagnosed with MPN.

The swelling went down after a couple of days, but this ulcer came and won’t go away! Mouth wash, salt water and now trying TCP. Not sure what to do next. The ulcer is on the cheek side not the gum.

Has anyone experienced this? Any suggestions?

Thank you for reading this!

[Cat1001954]

what mouthwash did he recommend? I use biotene. I get more like cold sores on my lips have you tried bonjela?

[Cokopops in reply to Cat1001954]

I was given Benzydamine. And yes did try bongela. I’m about to have a spoonful of Manuka honey…

[hunter5582]

I did get painful ulcers in the sides of my cheeks when I was taking HU. A topical get called AO ProVantage helped, but did not prevent the ulcers from occurring. The ulcers, canker sores and damage to my tongue got progressively worse even at a reduced dose. The oral problems did not clear up until I stopped the HU.

Suggest you review this with your MPN care team ASAP. Perhaps they will have suggestions on how to manage it. The good news is that if it turns out that you are HU-intolerant, there are other options. We are all different on how we respond to these meds. Sometimes it just takes some trial and error to find the right approach.

Wishing you success in getting this sorted ASAP.

[katiewalsh]

Hi. A mouth rinse of 1 teaspoon baking soda & 1 teaspoon salt in 16 ounces of water is what my doctor recommended & I’ve found it very effective. I use it many times a day if I have an ulcer & gently swish it around in my mouth. I would not recommend using just salt water because it’s too harsh on mouth & gum tissue. First, before taking my hydroxyurea I drink water & then immediately take my pill & immediately drink water again. This reduces the effects of the capsule on my mouth surfaces. This may not help you but it’s worked well for me. I hope you heal quickly. Katie

[Mirror368 in reply to katiewalsh]

Hi Katie, I have been successful with your advice of drinking water before taking HU capsule, I wet my lips, swish water water around my mouth, tip the capsule into my mouth, and finish with glass of water. So far no mouth sores, Eileen

[Meatloaf9]

Hi, if you get an oral ulcer that does not heal in 2-3 weeks and not getting better it might be a good idea to have it checked by a dentist or oral surgeon. Not all ulcers are caused by HU. Best to you.

[Minify]

Have you tried L-Lysine? Before I was diagnosed with ET, I had issues with cold sores whenever I was in the sun. I found L-Lysine worked to stop and even prevent cold sores.

I started HU (500/day) in Sept 2022 when I got my JAK-2 ET diagnosis. It has worked well to bring my numbers into normal range. However at the first sign of an ulcer (different from a cold sore which has that prodromal feeling), I reached for my old bottle of L-Lysine and found it worked to stop the skin slough of the mouth ulcer.

So when I got a second mouth ulcer, I tried Lysine again and it worked. Happened again when a third ulcer started. Reported this to my hematologist who approved of the L-Lysine treatment.

So now I take L-Lysine 1000 3x/day when I sense ulcer starting. Once it’s gone (usually within 24 hours), a preventive doses of 500/day seems to work.

I note that the mouth ulcers with HU are different than cold sores. The HU mouth ulcer starts with a thinning of the mucous membrane, then skin sloughing, and then friability and slight bleeding. Not accompanied by the prodromal pain and blistering that characterizes a cold sore.

[Cokopops in reply to Minify]

thank you for your reply. I’ll have a look at this Lysine

[Buttercup191]

Hi. I suffer terribly with mouth ulsers. I'm on 1000mg Hydroxycarbamide per day. My dentist told me to try Difflam mouth wash and I have to be honest it is great. Totally numbs the ulser so eating and drinking is easier.