DENMOOR11 years ago

Hi Mollycat

I have ET and had it now for 17 years. Been on chemo for 12 years. I suffer with mouth ulcers and as we speak got a huge one on my tonsil with pain in right ear. Felt soooooo poorly and may have to give in and see doc. I think ulcers are a result of poor immunity from the chemo but not sure in your situation. I can empathise as sometimes I could have 5 at a time and can barely eat. Sorry not much info to give you. Have you tried Difflam mouth wash? It can numb the mouth for a short period, my consultant usually prescribes me a couple of bottles on each visit.

Denise x

Aime11 years ago

Hi Mollycat and Denise

I have PV, no meds apart from for itch. I was just complaining to my husband about the amount of mouth ulcers I was getting - they seem to like my tongue the best! They don't last long but occur frequently!! A pest!! Will try the mouth wash, thanks. Aime x

harleydavidson11 years ago

Hi guys. My dad had MF and I have PV, he was told to eat a slice of fresh pineapple a day as a prevention and it really helped him as he suffered very badly. Hope this helps. Mel

JediReject11 years ago

Hi Mollycat. Like Denise I get clusters of these irritating little suckers and I'm rarely clear of them for long. I'm sure It's the Hydroxycarbamide causing them. A salt-water rinse out is a cheap alternative to over the counter products which by and large don't work and my advice to anyone is don't waste your cash on them. Prescribed mouthwash types are ok providing you dont pay for them as they might be cheaper off prescription. I've also heard of the fresh pineapple which is very much worth a go. Cheers

Mollycat11 years ago

Thanks to all for the replies - I have something from the doctor which I hope will sort out the current problem - I guess that as we all have to take good care of ourselves and try not to get too rundown.

bruddery11 years ago

Hi there. Have been on hydroxyurea for the past 7 years, along with allopurinol, aspirin, atorvastatin, and lanzoprazole. As a result of all the meds (and I did link it to hydroxyure as each time they increased I got the most awful mouth ulcers and swollen tongue. This would be so severe on occasions that I could not even drink let alone eat. The hospital referred me to the dental hospital to see what could be done, as they needed to increase hydroxyurea (I was already on 1500mg - 3 times a week and 1000mg - 4 times a week. The dental hospital after examination (and regular 3 month follow ups) prescribed Betnesol - 500mg (steroid) not to take but to use with warm water as a mouth wash - two tablets dissolved 3 times a day and left in mouth for 10 minutes or one tablet dissolved in warm water 6 times a day for 5 minutes. (have to do the three times a day as leaving work to mouth wash 6 times is a bit much!!) It really does work even if a bit fiddly. I now use it whenever I feel a mouth ulcer starting and it seems to be doing the trick. Good luck.

Borage11 years ago

Hi Mollycat,

I have had frequent mouth ulcers for the past 4 years, they are very sore and slow to heal. I have ET and take hydroxycarbamide and aspirin. I tried alcohol-free mouthwashes with little effect.

Recently this was discussed on the MEJ Thrombocythemia forum and "oil pulling" was recommended- using sunflower, sesame or coconut oil for a 20 minute mouthwash every morning. I read about it on line and tried it. Sainsbury's Pharmacy got me some coconut oil for about £1.30. It starts as a waxy solid and melts in the mouth. It is not unpleasant. You spit it out afterwards. Amazon had it on offer for 6 small bottles.

For me it worked, the mouth ulcers cleared within 2 days and have not returned. My teeth are much whiter too, and my hay fever symptoms have improved.

Best wishes,

Borage

Hidden10 years ago

I have only recently had a swollen tongue and mouth ulcers after taking hydroxy for 2 years. This is the first time I have been bothered with them and significantly it was at the same time that I had a heavy cough and cold, I used Dentinox baby teething gel which gave instant relief for a couple of hours.