Burning Mouth Syndrome

[dladydi]

Has anybody else suffered from burning red sore lips? Is this a reaction from Hydroxyurea? I have just been prescribed the generic version because of the backorders.

[katiewalsh]

Hi I’m sorry you’re experiencing this. Hydroxyurea if given the chance can really beat up our mouths causing sores, tooth problems & probably burning lips.

The trick I’ve learned to use is to treat any irritation with a mouth rinse a few times daily with 1t salt & 1 t baking soda blended well in 8-16 Oz of water. (Sorry I need to check amount of water & will PS you). And shaken first each time before using it. (You can store a few days in the refrigerator.). Really let it sit on the problem area before spitting it out. You can also get prescription meds. But take your Hydroxy when your entire mouth is very moist. Then sip some water, quickly put the pill into your mouth avoiding your lips and immediately swallow a lot of water. Until your lips heal you should probably avoid anything acidic, including soda & acidic food. If it doesn’t get better with the mixture I mentioned ask your doc for a prescription. Let us know how it turns out. Katie

[katiewalsh in reply to katiewalsh]

PS. It’s 16 ounces water. Katie

[dladydi in reply to katiewalsh]

Thank you Katie. I will make this formula and give it a try.

[Inca]

Yes me ,for eleven yrs on Hydrea,less now one yr on Rux,I do exactly as Katie advises.Best to you.

[dladydi in reply to Inca]

Thanks for responding Inca.

[wotan10 in reply to dladydi]

Try changing your tooth brushes regularly, storing them upright. Have a word with your team at the hospital they prescribe a mouth cream that works. Also check with your dentist too. Let us know how you get on.

[dladydi in reply to wotan10]

Good advice. Thanks!

[piggie50]

Check the ingredients of your toothpaste. One without Sodium Laurel Sulphate should be used.

[dladydi in reply to piggie50]

Will do! Thsnks

[3cance in reply to piggie50]

I switched to Biotene toothpaste and it has really helped my burning mouth syndrome. My tongue was always affected with that burning feeling. I also use biotene lozenges whenever my mouth or tongue begins hurting. Biotin has a gel and mouthwash as well.

[hunter5582]

Mucositis is a common reaction to HU. It is a sign of toxicity. Unfortunately, HU has a low therapeutic index and signs of toxicity are common when the dose is therapeutic. What you have to decide is whether the adverse effects are worth the benefits. The risk benefit analysis varies from person to person. There is no one right answer for all. You will have to work with your doc to determine what the right answer is for you.

Meanwhile, in addition to the options others have stated, it is very important to stay well hydrated when on chemotherapy. For treating any mouth ulcers, PerioSciences make a product called AO ProVantage. It is a gel that helps the ulcers to heal more quickly. If you are having oral issue, do pay attention to the risk of developing an oral carcinoma. While not common, this is a known risk with HU. Another good thing to talk to your doc about.

Hope you get it all worked out ASAP.

[dladydi in reply to hunter5582]

Thank you so much Hunter. From what I have been reading it seems interferon is superior to hydroxyurea. What do you think? I hate that we are guinea pigs are have to go through this lousy process of getting damaged by drugs before we are being considered for superior medications due to protocol, cost, etc.

[Mirror368 in reply to dladydi]

I am curious…how much HU are you taking?

I was just lowered to 500 mg every other day and my platelets are still dropping, Eileen

[hunter5582]

I am HU-intolerant (toxic effects at low doses) so my own experience with HU is rather negative. Others tolerate it better. The MPN specialist I see now does not favor routine HU use. He typically prefers peg-interferon as a first line chemotherapy. Based on the risk profile of the patient, he does not necessarily recommend chemotherapy for cytoreduction at all. He prefers to look at the symptom profile for the patient rather than trying to "sanitize" the blood cell numbers. The one number that does matter is hematocrit. Keeping HCT below 45% is very important in terms of risks. I am on a phlebotomy-only treatment protocol. It does seem to be working well.

If I ever do need to go back on chemotherapy for cytoreduction, I would look to peg-interferon or possibly Jakafi as viable choices. HU is much cheaper and docs are often pushed by the payers' formularies to try it first to save money. While some people benefit from HU and seem to tolerate it well, not everyone can. It is important to bear in mind that all of the chemotherapies come with their own risks and benefits. Unfortunately, figuring out which one is best for you does sometimes require some trial and error.

Please do not hesitate to push for what you think is in your best interests. it is your body and your right to choose what you think is in your own best interests. Assertive patients receive higher quality care. Passive patients do not.

All the best.

[dladydi]

You always give good advice. I appreciate it Hunter. Thank you.

[Lifam]

I'm on low dose HU(500mg) daily, I rinse my mouth with warm salted water after taking HU as well after cleaning teeth twice daily, so far ok with this problem. Hope you feel better soon.

[dladydi in reply to Lifam]

Thanks Liam

[Inca]

Meant to say,I cannot tolerate any tooth paste,believe me I have tried all!!

So I use a baby tooth paste,have managed to progress slowly to 6 yr old!!!

For me no probs and teeth are super shiny without all the whiteners etc

Give it a try ,think at the mo it's a Colgate one bought in Boots when I was in Uk,usually I use French makes as I live here......all O K. Keep persevering you will find relief some how.Best to you .Sally

[Lifam]

In Australia, I use natural tooth paste

[Hollyhedge]

Hi. I have PV and due to peripheral neuropathy after taking Hydroxicarbomide my PV Is now managed by periodic venesections. These have not yet been as regular as they should be. When my blood is thicker than it should be, I find that I sweat much more and if I do not drink enough fluids, my lips go bright red and very sore. Hopefully now they have agreed to test my blood every 2 months so we can decide when a venesection is needed. Hope this is helpful. What is your illness? Best wishes.

[dladydi in reply to Hollyhedge]

I have PV and have been having phlebotomy treatments every 2 mos. I try to stay well hydrated. The redness and swelling have reduced and now the sores have appeared. It is taking a while to heal but I am plugging away at it. Thanks for replying. I appreciate the support.

[Hollyhedge]

U are welcome. Stay well hydrated and as healthy as u can by eating good food x

[NedKel65]

hi dladydi

Yep on HU and definitely have bouts of mouth ulcers, burning red inside mouth

Tingling and stinging feeling in lips

I’m not on 500mg daily 6/7 days when I skip the 7/7th night dose that brings the ulcers, sore raw mouth and gums

Uggghhhh will be pushing to change this med next Haem visit