Mouth ulcers

[Spanelmad]

Hi everyone now on my fourth week of HU and another side effect.Any top tips for mouth ulcers would be appreciated.

[Cat1001954]

My heamatologist gave me Benzydamine. 0.15% w/v. And it works you can also buy from chemists

[Cat1001954 in reply to Cat1001954]

Mouthwash

[Spanelmad in reply to Cat1001954]

Thanks Cat will contact To tomorrow

[Cat1001954 in reply to Spanelmad]

👍

[Hidden in reply to Cat1001954]

Glad you have a helpful haematologist. All mine did was stress there was no proven scientific link that hydroxycarbamide causes mouth ulcers, just that they would take longer to heal because of said medication. He’s all heart he really is.

[hunter5582 in reply to Hidden]

That is ridiculous. Oral ulcers/stomatitis is a well documented HU adverse effect. No heart and misinformed is not a good look on a doc.

[Cokopops in reply to Hidden]

I agree with Hunter. Find another haematologist. Mine told me about all side effects and she is so helpful with everything. Good luck!

[Pachena]

I’ve had some trouble with mouth ulcers too tho it was more in the beginning.

My husband sat next to a periodontist on a long flight once and he mentioned to the specialist about his daughter’s problem with mouth ulcers.

The periodontist recommended getting a mouthwash with Chlorhexidine in it with instructions as per below -

“Mouth Ulcers

As per Alan’s encounter with a periodontist

Chlorhexidine

Dilute to .2 with water and use as mouth wash for two days to break cycle.”

We use Savacol as in the pic and it works for us. It contains Chlorhexidine Gluconate 1.28mg/mL.

Good luck 🌸

This is the mouthwash we use.

[Oscarsboy in reply to Pachena]

Glad I have seen this as after 2 years I am getting g them on the inside of my lips.

[Spanelmad in reply to Pachena]

My local pharmacist confirmed that if using a mouthwash it needed the. Chlorhexdine gluconate to work on our type of ulcer.Thank you so much for your support.

[Spanelmad in reply to Spanelmad]

Well the mouthwash is definitely helping not sure about the gel .

[Pachena in reply to Spanelmad]

Sorry I should have mentioned that the specialist said to use the mouthwash 😊

[Spanelmad]

Thank God for Amazon !!!have ordered , so fingers crossed

[Spanelmad in reply to Spanelmad]

Have been to my local chemist and they've reccommended Anbesol mouth gel and an antiseptic mouthwash

[hunter5582]

I got raw bleeding ulcers, canker sores, and severe dyschromia of the tongue when on HU. AO Provantage gel helped the ulcers heal, but did not prevent them. The oral issues continued even at a very low dose. The issues did not resolve until I discontinued the HU. Others have reported that drinking a larger amount of water when taking HU helped.

Wishing you success in finding something that works for you.

[PhysAssist in reply to hunter5582]

Hi all,

When I was on HU, oral ulcers were definitely part of my adverse effects, and while they have decreased since I stopped it, they didn't/haven't returned to baseline [prior to HU, I only ever had them with exposure to very specific triggers, and even then, only rarely].

My general oral sensitivity has likewise not returned to baseline either.

Best,

PA

[PhysAssist in reply to PhysAssist]

PS: I forgot to add that holding a tablet of L-Lysine [an OTC amino acid supplement] against the sore[s] for 5-10 minutes both anesthetizes them [for up to 12 hours] and seems to speed up healing. I swallow the tablet with water after that timeframe.

Best,

PA

[Spanelmad in reply to PhysAssist]

Thank you so much for your advice will definitely entry the tablet trick.The mouthwash is definitely helping.

[Wesleygrange2a]

Hi I find Peroxyl made by Colgate helpful. Seems to help them heal quicker for me. I take Hydroxycarbamide but suffered from mouth ulcers since I was a child and have tried lots of different things over the years. Can buy it in chemist or supermarket.

[Spanelmad in reply to Wesleygrange2a]

Thank you for the advice

[michael123]

I myself went off of it. caused me too many side affects. I rather have high platlets. hu gave me permanent nerve damage and a host of health problems.

[Carol0925 in reply to michael123]

Sorry to read this. I suffer from chronic nerve pain and this is one of my concerns with Hydroxy. Did you have any nerve problems pre starting it? Think I’m going to opt for watch and wait. 🤔

[Spanelmad in reply to michael123]

Already have spinal nerve damage so hope for no more

[Pachena in reply to michael123]

I get pain in my toes and the podiatrist said that the chemo treatments do give permanent damage which I was sorry to hear 😔

[Whitehair51]

Use a toothpaste that doesn't have laurel sulfate, it's less painful on a sore mouth.

[Jsb45]

I just stated getting canker sores after 4 plus years on hydroxy. Grateful for your post, my Dr has me trying valacyclovir hydrochloride 500 MG daily to see if they can be prevented in the first place. Good luck

[Spanelmad in reply to Jsb45]

Trying over the counter stuff first . But have a GP appointment booked in a couple of weeks if there's no improvement

[GarciaB]

I make magic mouthwash. Benadryl and mylanta. The blend can be found online

[katiewalsh]

Hi I’ve had success doing a combination of things. First, I take a drink of water immediately before putting the pill in my mouth & immediately swallow it with more water. And I’ll have another drink of water. That keeps any caustic substance away from my mouth tissue. That should prevent them. It if it doesn’t I use a mouth rinse a few times daily. Mix 1 teaspoon salt, 1 teaspoon baking soda with 16 ounces of water & rinse the inside of your mouth & hold it a few seconds before spitting it out. Keep this mixture refrigerated and change it every day or two. You also want be using an extra soft toothbrush & the plainest of toothpaste-no whitener or tarter remover. They’re too caustic when using hydroxyurea. Good luck. Katie

[Spanelmad in reply to katiewalsh]

Been doing the water trick from week 2 and have now added in the mouthwash.so fingers crossed.Thanks for the toothpaste information will change this next and back to a manual toothbrush.

[PhysAssist in reply to katiewalsh]

Hi katiewalsh,

Your recommendations are generally good to prevent and treat sores from acidic foods, etc., but the local/oral symptoms caused by HU are unlikely to be because of any local caustic effect, it's almost certainly due to its systemic effects on healing and cellular maintenance.

Also the buffered saline solution you described is perfect for any kind of oral discomfort or sores, regardless of causation. I also recommend [and personally use] that mixture in those proportions for nasal/sinus irrigation, but only with distilled water or [boiled ] tap water.

It's important not to use tap water for nasal or sinus irrigation because it can contain [chlorine-resistant] amoeba, that can penetrate into the brain. It is fine to use it for oral rinses though.

Best,

PA

[dogsandhorses]

I had to go to an Oral Surgeon for that, and she prescribed Dexamethasone Elixir, and Fluocinonide gel. It worked great, and I only had to use it for a short while.

[Spanelmad in reply to dogsandhorses]

Seeing my Gp soon so will ask if they can prescribe.Thankyou for your reply

[dogsandhorses in reply to Spanelmad]

Neither my Primary care physician, my regular Dentist, nor my Hematologist knew what the ulcers were, and none had a clue what to do about them, or really cared. Only the Oral surgeon who had done a gum graft on me in the past was able to help. Unbelievable!

I had tried all the OTC, and home remedies I could find, and none of them worked. I had every mouthwash, etc. lined up in my bathroom, drank 8 ounces of water with "the pill", ate yogurt, and spent too much time and money trying to fix it on my own. These prescriptions did the trick for me.

[IDRE]

Before I started HU I read on this site that one person took their meds with a spoonful of yogurt. I have done it from the beginning and I have had no mouth ulcers. ( I have always had one or two mouth ulcers occasionally and that hasn’t changed.) So I don’t know if I would have them if I didn’t take the yogurt. Regardless I never take my HU without yogurt.

[Spanelmad in reply to IDRE]

Never heard of this before but will give it a try

[Tipsy2023]

hi for mouth ulcers I use Aloclair spray at least you can direct it and unlike gels doesn’t slip off … instant pain relief and healing .

[Spanelmad]

Good to know

[givingITMybest]

I found taking lysine, 1-3 tablets helpful. Also, i was eventually given a prescription for oral lidocaine to swab onto the sores. This also helped.

[PhysAssist in reply to givingITMybest]

Hi givingITMybest,

Good for you for recognizing and using Lysine!

You may want to try my trick [from my post above] with holding the Lsyine tabs over the sore[s] for 5 minutes before swallowing them, it really works to completely relieve the pain and tenderness, and I do think they also heal faster afterwards.

Best,

PA

[Lorri1967]

hi there I’ve been on hydroxi for a year and half mouth ulcers getting worse can you tell me which product worked best for you ? Have just joined today and so glad to read some of your replies as consultant isn’t much help to me x

[Spanelmad in reply to Lorri1967]

Any thing with Chlorhexidine Digluconate in it was what my local pharmacist recommended

[Spanelmad in reply to Lorri1967]

Sorry on Holiday in Dorset and the Wi-Fi keeps disappearing!!!The one that I use is by care+. And is peppermint flavour.When the ulcers were bad used 3 times a day.Now once or twice alternating with a normal mouthwash.

What really helped was stopping the a HAnd switching to interferon .

Hope your doing ok and not too sore

[Lorri1967 in reply to Spanelmad]

thank you so much for replying I will try that and see how it goes they seem to come and go every few weeks but yeah I think maybe that will happen eventually consultant has mentioned interferon but a bit scared of change after reading all the things about that too but I suppose if I have to eventually I will 🙄.

Thank you again and I hope your enjoying your holiday and are well too x

[Spanelmad in reply to Lorri1967]

The interferon worked really well for me, but I'm currently having a break due to some nerve problems, hoping to go back on in July.

[Lorri1967 in reply to Spanelmad]

thank you so much for letting me know and hopefully goes well for you again when you go back on it x