I was diagnosed with PV and have to take Hydroxycarbamide. I'm breaking out in cold sores constantly. Has anyone else suffered with this?

[jogging1]

[LouisePRV Volunteer]

Hi. Can t help you with that one but I have become allergic to all sorts of things. Strawberries, shellfish, caffeine to name but a few. Does anyone else have this problem?

[BlessedWithSix]

I suffer from a lot of ulcers on my tongue. I drink a lot more water when i get them. The dentist gave me a topical numbing to use so its easier to eat.

[Yvette49 in reply to BlessedWithSix]

Hi, do you still get these mouth sores, I am being plagued with them, and soo painful. I have a mouth wash recommended, but doesn’t work very quickly. I am interested in the numbing that you use ?

Thanks.....yvette

[Mwalimu]

When I started HU I had 'outbreaks' on my lips. Chemist advised Anubesol which I used but after 10 days or so, the symptom disappeared. Still get slightly sore tongue but rinse with Anubesol which helps.

[lucieboo]

Huh! HAVE to? I was prescribed Hydroxycarbamide, as an alternative to Busulfan which nearly killed me. I refused to take it and am now well. I have PV. My haematologist nags me a bit about my increased level of platelets, but I take no notice and just take the low-dose aspirin. I too drink plenty of water. Check out Hydroxycarmide positives and negatives on the Net. I'm no expert, just a 'patient', but I make my own decisions based on whatever evidence I can find.

[Murchadhmor]

I had to go up to 2500mg/day of this stuff when my platelets went off the edge. Had PV now MF. Get skin rashes on my head and my nails keep splitting. Don't know what my manicurist would say!

[Mazcd Partner MPNVoice]

Hydroxycarbamide can cause ulcers, especially in the mouth, and as said above, you can get mouthwash or gels to help ease the discomfort, they can be prescribed by your GP/haematologist or can be bought over the counter at a pharmacy. However, you should seek advice from your GP regarding the cold sores as cold sores are a virus and may not be linked to you taking Hydroxycarbamide, it can sometimes be too easy to blame our MPD or the medication we take for aches/pains etc and we could be ignoring something that can be treated.

[jogging1]

Thanks very much everyone for your suggestions and advice.

[isidora4]

Another word about Hydroxycarbimide - one of the side effects are ulcers - I took it for years without any problems but suddenly developed two horrible ulcers on my right ankle that took a whole year to heal up - was immediately taken off Hydro.... by my haematologist.

After a couple of months without anything but aspirin I was given an injection called

Phosphorus42 at the Department of Nuclear Medicine - had a tough time after this, two heavy nosebleeds and felt really unwell. Anyway, it did bring down my platelets I currently have 516 platelets and am only on aspirin. Will see how they go at my next check up later in August. I have ET. Hope this is of some help. I would suggest you tell your haematologist about your ulcers.

[ladymoi]

Have you asked your haemotologist if Hydroxy could flatten your white blood cells and possibly asked what your neutrophil count is? I have to stop taking hydroxy for a few days if I get an infection/ wound/ taking antibiotics/temperature and this enables my immune system to improve a bit and to aid my healing process. I have not found Hydroxy has increased my cold sore outbreaks but I do get them as a result of being "run down", stress or a period of missing my sleep. Do seek help from your Consultant.

[Nirbhebe]

Yup, I get cold sores all the time. The mouth ulcers I have had were when I first started taking HU. It's annoying . I use tincture of Myrrh for my cold sores. Drys them right up. The biggest problem I have is as they are healing they crack and bleed and sometimes the blood is hard to manage.

Such a glamorous illness!

Best to you

EB