I have been on Hydroxycarbamide since January 2018 500mg tablets two a day Monday -Friday 3 on Saturday and Sunday.
Recently I have experienced discomfort in my mouth and on tip of tongue and it’s been suggested by GP it maybe burning mouth syndrome . He has suggested a mouthwash for two weeks to see if it helps ease the symptoms.
Has anyone experienced similar feeling and could the Hydroxycarbamide be a possible cause after 6 years?
Kind regards
I did experience something similar. Oral ulcers, stomatitis, and issues with the tongue are well known hydroxyurea adverse effects. Some people do find some mouthwashes helpful. It also helps to take the HU with a lot of water. Some take it with a meal.
This is an issue that you need to review with your MPN care team. Your GP may not be familiar with HU adverse effects and how to manage them.
Here is a bit of information on HU that may help.
drugs.com/monograph/hydroxy...
hello. How strange. I have had the same recently. I am in the same dosage of hydroxycarbonide as you. I have been taking for 8 years. It was recently increased to 3 at the weekends. I thought I was eating my food too hot.
I don’t speak to my consultant for another 3 months so would be interested how you get on.
Take care
I was on Hydroxyurea for 7 months. 4500mg weekly. I had two days per week on 1000mg and five days at 500mg.I developed awful peripheral neuropathy in my feet and lower legs and also a tingling, burning sensation in my mouth which still bothers me two years after stopping the medication. I still get PN flares in my legs occasionally but my mouth symptoms have not really eased much.
Mouthwash didn't help much. I think I've just got used to it. It's bothersome but not particularly painful.
I only take a 100mg daily aspirin for now. I won't go back on Hydroxyurea again.
Sounds like you're on a quite high dose. Has it ever been reduced to see if a lower dose is still effective?
If Mouthwash doesn't help Google burning mouth syndrome and see what else might help.
I hope things improve for you.
Sorry to hear that you also experienced oral adverse effects from HU. It took well over a year for the oral effects to fade away after I stopped taking it. The surface of my tongue had turned as white as snow. The subsided but the surface of my tongue was permanently altered, now appearing as geographic tongue. Fortunately, there is no pain nor any change in taste.
Hopefully, the neuropathy will continue to fade. Depending on the situation, peripheral nerves can repair themselves but it takes time.
Wishing you all the best.
Thank you.The PN has improved a lot and I only get flares occasionally now.
The mouth though is odd. It went away for a while but then it started up again and hasn't subsided. At times there will also be strange, unpleasant tastes.
The HU didn't reduce my platelets either. Side effects without benefits.
We are all so different when it comes to how medication works for us.
Take care.
The HU did OK with platelets, but not work for the erythrocytosis for me. . More side effects than benefit in my case too. We are indeed all different in how we respond to the medications.
There is a rare HU side effect of depapillation of the tongue. This can cause alteration in taste. It may be worth assessment by an otolaryngologist to see what is going on with the ongoing oral issues. If you are seeing a MPN Specialist, perhaps that doc can recommend someone familiar with MPN chemotherapy side effects.
Wishing you all the best.
Hello, I am interested to know if it was your own decision to come off hydroxycarbamide and if your platelets have increased since . Thankyou
I went off HU in consultation with my haematologist. The peripheral neuropathy I experienced was a full-on burning sensation that disrupted my sleep and general well-being. I was quite unwell for most of 2022 and lost 10 kilos. For me, the "cure" was worse than the disease.
The dose of HU I was on had barely made a difference to my platelet level while I was taking it.
Interestingly, in the 9 months or so after ceasing HU my platelets did decrease below 600 but are now at around 620.
In Australia there was a change in ET management protocol in September 2021. I went from being high risk, due to having turned 60, back to intermediate risk and on aspirin only.
This was based on me being JAK2 negative (I'm triple negative actually) and having no thrombosis history or other risk factors.
At some point I may need cytoreductive therapy again in which case it will have to be Pegasys interferon as that's the only other option in Australia.
For now, apart from PN flares and my tingling mouth, I feel very well.
I read accounts of people being on HU for years and they tolerate it quite well. Not the case for me but that's life.
Best wishes and take care.
hi i am on the same dose of hydroxycarbamide as you.i also have mouth discomfort and sometimes sore tip of tongue, also occasional sore throat. Though its not something i cant put up with as long as platelets are controlled.
Hi, probably best to speak to your hematologist about this first. I also had burning tip of the tongue and lost the papilla on the tip making it bright red. I had been on HU for about a year when this happened. I changed my toothpaste and mouth rinse and started taking some B12 and it all went back to normal. I have continued the HU. This is not advice, just what worked for me, we are all different. Good luck in getting it sorted out. Best always.
You have done very well after 6 years. I had to come off it after roughly 18months as I was getting really bad mouth ulcers that were not healing and moderate hair loss. For the last 5 weeks have been Ruxolitinib, 10mg twice daily. So far so good. The mouth ulcers have all healed and definitely not so much hair on the brush. The downside is slight anaemia and burning in legs and feet. I am being monitored every three weeks so too early really to see what difference this might make. Do keep in touch and let me know how you are doing. It’s quite a rare condition so not publicised as much as others.
hello Edinburgh1953 - I take my last hydroxy tablet tonight after 7 years on it + am changing medication - over the last year I have developed neuropathy and mouth ulcers/burning tongue which previously I managed with mouth wash + bonjela but which have become problematic - would certainly take it up with your haem - hope you get things resolved. Anne-Marie.
I am sorry to hear about your issues.I developed neuropathy in my legs and feet after only 7 months on Hydroxyurea. I too have mouth issues. Tingling, burning tongue. Sometimes lips and gums. Also changes in taste at times.
Mouth sores and thinning hair I expected but not the neuropathy or the burning mouth. Two years off HU and I still get occasional PN flares and my burning mouth syndrome continues to bother me.
I hope your neuropathy and mouth issues resolve faster than mine.
HU didn't even reduce my platelets.
I wasn't put on an alternative med and am reluctant to try unless absolutely necessary.
My platelets are stable at around 620 and I continue with 100mg of daily aspirin.
Best wishes to you.
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swallowing hydroxycarbamide
Ruxolitinib and Hydroxycarbamide 
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