Hi everyone, just found this site. I have been on hydroxycarbomide for about 2 years, and the last year I have been suffering with mouth ulcers, almost every week, and the one I have now for over a week is horrible, the over the counter remedies don’t touch.it. They are always under my tongue or at the bottom of my lower lip. Very difficult to eat. Has anyone else had these and if so had any luck with something to ease them. ..?
( my name is yvette, but cannot see how to change it)
Hello Yvette, first thing, if you do want to change your username you need to go into settings, click on the picture, where you click to log out, and scroll down to Settings, then scroll down the page to Username, you can then change your name.
With regards to the mouth ulcers, speak to your haematologist about this problem as he/she may be able to change the dose of Hydroxycarbamide to see if this helps. You can also ask either your haematologist or your GP if they can prescribe something that will help. Best wishes, Maz
Hi Plantlady,
My heam prescribed chlorhexidine mouthwash and told me to rinse after every meal. It really helped and I haven’t had any ulcers for quite a while.
Good luck
Judy
Hi. I have been using a Forever Living aloe toothpaste . I had mouth ulcers when first going on hydroxy and so started using this toothpaste. Only the occasional small ulcer since. My dentist is very impressed and recommended it to another chemo patient who also had good results.
Judy
Thanks, Judy this sounds promising, will try it 😊
Hi there, I also suffered from ulcers from Hydrea and I stopped using the drug for a few weeks (three I think) and then it didn't return once I started again. Maybe speak to your doctor and see if it's a possibility for you. Also, have you tried colloidal silver?
Hi Yvette.
I also take Hydroxy and get mouth ulcers. I've got two at the moment. They're under my tongue and are quite sore. I have found that rinsing my mouth with salt water helps as does Difflam which is a mouthwash. Difflam does have Aspirin I think, so I use it sparingly as I am already prescribed Aspirin for the PV. I hope this, or one of the other suggestions helps. Ulcers are horrible things. Fortunately, they are usually short lived.
All the best, Sandra.
Hi Platlady,
I see a medical herbalist and she gave me Myrrh tincture and it works a treat.
Anytime I have a hint of a mouth ulcer, I swish it around (it needs diluting) and I have no soreness the next day. Has been used for thousands of years. Neals Yard also do a Lavender and Myrrh mouth wash which though expensive is luxurious and works!
Hi Yvette
Yes, mouth ulcers are really uncomfortable. After almost three years of taking Hydroxy, I started to develop them. As soon as one would clear another would pop up. I used a mixture of salt and bicarbonate in hot water to swish a few times a day. I bought several gels (including Medigel from the pound shop as recommended on this forum). I found the gel soothing particularly at night as it numbs the area. Also as per advice on here, I checked the ingredients in toothpaste and sodium lauryl sulphate is best avoided. Most pastes contain it except Sensodine and Dentalux Sensitive Plus which is own brand from Lidl. I bought a special mouthwash on advice from the pharmacist but cannot remember the name. They eventually cleared and now I only use the Dentalux paste and swish twice a day with a Colgate wash which is alcohol-free and as per the label fights bacteria. I hope this is helpful.
Hi, thank you....I am keeping notes. Everyone has been sooo helpful, I really appreciate your help. And also nice to know there are a few others out there with this condition. I don’t feel so alone.
My haematology nurse has just phoned me, and after talking to the Dr they plan to take me off the hydroxycarbomide for 4 weeks to see how I get on, then obviously go back on them after. I think they did this with Chris, on here.
Thanks again every one , Yvette Xx
Hi. Sorry to hear about your problems. I’ve learned a few things to help with mouth ulcers. I always take my pills immafter drinking water & swallow as fast as possible. This protects mouth from unnecessary exposure to the pills. I only use super mild toothpaste: no whitening or tarter control, etc. I only use the softest toothbrush which I further soften with super hot (not boiling) water to protect my tooth enamel. No alcohol mouthwashes. When I have ulcers I rinse with 1/2 teaspoon salt & 1/2 teaspoon baking soda in 8 or 16 ounces of warm water a few times daily. The solution can be kept a few days in fridge. Best of luck to you. Katie
I also suffered from the mouth ulcers, which I understand to be a sign of a compromised immune system. It is considered to be a sign of HU toxicity. Unfortunately, HU is a therapeutically weak drug so the doc has to keep you on the edge of toxicity for it to reach maximum benefit. In my case, I also developed Thrush - which has persisted for over 5 weeks despite being on Nystatin. I am glad to be all the way off of HU, perhaps the Thrush will finally clear. While I was dealing with the mouth ulcers, the one thing that helped as Persiosicences AO ProVantage. It is a gel that helps mouth sores to heal more quickly. The doc also told me to rinse with a baking soda solution, but it did not really seem to help. Hope you get the mouth ulcers under control.
Hi mouth ulcers change your tooth brush regularly every three months.
Ask your clinical nurse specialist for the name of the oral gel they use for chemo patients.
I use a soft tooth brush.
Hope this works for you.
Keep well
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