Hi, does the inside of anyone else's mouth peel?

[Ffionllewelyn]

I'm 19, i have ET and take Hydroxycarbamide.. It might be down to anything like a change of diet i guess but for the last 2 weeks the inside of my mouth has been peeling and my fingernails keep snapping off!

It's probably nothing

[Twinkly]

No honey ,,it's not nothing ,we all seem to get these strange new side effects,

I paint my nails a neutral colour to stop them cracking and breaking off.

Use mouth wash to heal sore cheeks and gums,, all these things are sent to try us ,,

Try to stay positive ,,spring times coming !!

[Aime]

Definitely not nothing because we have to put up with things as Twinkly says. My friend had nail problems and got special nail varnish which gave a strengthening coat as well as looking pretty! My mouth doesnt peel but prone to mouth ulcers - I find mouth wash (sensitive one) does help. Every sympathy, best wishes Aime x

[Mazcd Partner MPNVoice]

Hi Ffionllewelyn, Hydroxycarbamide can cause mouth ulcers, you can ask your haematologist or GP to prescribe you a mouthwash to help, some people also suffer from peeling fingernails, so as Twinkly says, it's not nothing but unfortunately a side effect of the medication. Best wishes, Maz.

[Amacp]

After almost a year of hydroxycarbamide my nails started to flake and break off. best wishes Anne

[catkinspolymer]

Hi

Hydroxycarbamide (HU) is known for being rough on nails and skin. At 19 you are jolly young to have to be on this powerful medication. Are you blood counts so bad that its needed already in your life?. I think you should seriously think about getting a second opinion (somebody Like prof claire Harrison at Guys Hospital London) many people as young as you can manage their blood counts with baby aspirin and maybe the odd venesection.

Us oldies probably need HU as we are more prone to stoke/ heart attack . I have been on it for 20 years and am now nearly 70. Its rough on my skin.

all the best town crier

[garden41BULBS in reply to catkinspolymer]

Is it best to do plenty of moisturising on my skin,

AND what role does the asprin play?

[Ffionllewelyn]

Thanks for the advice everyone! I take x2 on the week days and x3 on the weekend and I take a baby aspirin everyday at the moment (is that the average??). my blood count at the start was 2047 and last time it was around 500, I've been taking them for a year now and my count hasn't really stayed stable yet!

[Ffionllewelyn]

Just got my results now and they are down to 351

[ballycool]

Hi, you are young to have ET, if Hydroxycarbamide keeps your platelet count down it is worth it. I have the same symptons as you, nails are a nightmare and inside my mouth I have ulcers rather than peeling but feel it is a small price to pay to have platelets at a good level. It took about 2 years to have my platelet count consistently below 500 and now only see haematologist every 6 months with blood tests every 2 months in between. Good luck, I hope all goes well for you.

[malachy]

Hi yes over the years my mouth has peeled, got ulcers and my toe nails have fallen off, or had to be pulled off. This was happening pre diagnosis too (they thought I had reactive thrombocythemia) and I am only on aspirin so not sure if it is the ET or not. I am sorry you are having to deal with this at such a young age.

[Ffionllewelyn]

thank you everyone! it's not too bad of a thing to deal with being young, doesn't stop me from doing anything! so glad I found this page though it's answered a lot of questions my doctor couldn't