Hi ya everyone, so I think I posted about a couple of months ago, about these blooming mouth sores. No remedy seems to help them ☹️ But I do have some medical that numbs for a short while. I saw my oncologist two weeks ago, and she has stopped my hydroxycarbamide to see if the mouth sores go away ( then knowing that it’s the tablets causing the sores ) I am in my second lot of two weeks, and just two days ago, the sores have started again. I was hoping it was the pills,.....but now it looks like I have another problem to deal with ☹️
Will they ever go ? 😥
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Yvette49
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I get a prescription toothpaste from my dentist, which has, for the most part, cleared my mouth ulcers and bleeding gums. I also go to the dentist for a check up every 6 months rather than yearly to keep an eye on mouth health whilst on meds (currently peg interferon but have tried them all).
I had exactly the same situation with Hydrea, and it took me 3-4 weeks to get rid of the mouth sores, and then the doctor changed my medicine to interferon.
I went to 3 dentists that time and they confirmed I had no reason to receive these scores.
I have found colloidal silver as a mouth rinse then spit to be excellent at relieving mouth ulcers. I hold it in my mouth for 30 - 60 seconds before spitting it out
Hold out some hope. It can take your body some time to recover from the toxic effects of HU. My hematology office told me that the mouth ulcers were related to immune system compromise. I also developed a case of thrush and leukoplakia (damage/irritation to surface of tongue) due to the HU. After several months of discontinuing HU, the ulcers have mostly gone away, but the leukoplakia is still evident. It is certainly possible that the HU was just exacerbating a cooccurring condition. Canker sores can be caused by other things - maybe the HU was just making a pre-existing situation worse. The mouth is one of the germiest places in your entire body. Lots of bad-nasties in there. When I was having the ulcers, the one thing that helped as a gel from PerioSciences call AO Provantage . It helped with the pain and seemed to promote more rapid healing. Hope you get it figured out.
Mouth ulcers are such a nuisance and can be very painful. I was at the stage of just getting rid of one when another would pop up. I have tried every mouthwash and gel without success. The advice seems to be that if they last more than 10 days to seek medical advice. I had one which developed into a cluster. After four weeks and a steadily filling bathroom cupboard, I finally saw a GP who prescribed Hydrocortisone 2.5mg Muco-Adhesive Buccal Tablets and they worked after just a few days. When I collected my prescription and discussed the problem with the pharmacist, he suggested that I needed a preventative rather than constantly trying to treat already formed ulcers. He said he would order a special mouthwash for me. When I pop in next time, I will collect and let you know the name. I hope this is helpful.
I don’t know if it’s related to MPN’s but for my entire life, toothpastes with SLS (sodium laurel sulphate) have caused the skin to just peel off the inside of my mouth!! I have read that in especially sensitive people, it can even cause sores. All I did was switch to a toothpaste without SLS and all issues immediately resolved! I think the brand I use is thera breath and I get it at Walmart or any other store. It was a simple, easy fix to a lifetime problem. I hope this helps!
Hi Steven for taking the trouble for sending me that, it’s certainly looks promising...for the “dam blighters” and for people that get those leg ulcers, that seem to stay forever.
Hi all,...another update. I had a blood test for Ferratin, B12 and Folate, all have come back with the range that they would want them. And bloods still ok for my PV. ( even with not taking my Hydroxycarbomide.....) I still have mouth sores happening, but not as severe as they have been.
Maybe I won’t have to go back on Hydroxycarbomide. Has anyone else experienced this ?
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Cold sores
Mouth Ulcers 
Sore mouth
Dry mouth 
Update 
