Val

[garden41BULBS]

Just been diagnosed with essential thrombocythaemia, it's a lot to take in at first.

Will I get a bad taste in my mouth from HYDROXCY?

Will I still be able to Fly?

[Mwalimu]

I have taken HU since Nov 2011 and have not been aware of a bad taste in my mouth since taking it 'within' a meal. I also do long haul flights each year without any problem but always check my platelets a week or so before I leave.

You're right; it's a lot to get used to but it was mainly the shock in my case. Hope it is as straight forward for you as it has been for me. Good luck. Mwalimu

[bordeauxgirl]

Hi Val, I have PV and have taken Hydroxy for the past 18 months. So far I have had no bad taste problems ( unless a curry counts) and I regularly fly out to New Zealand to visit my son which is a very very long journey, hope this little note helps, but check with your Haemo doc to be on the safe side. Good Luck and Health , June.

[jane13]

don't forget to always drink a large glass of water with the hydroxy!

[Sand-Dancer]

Hi Val. I have taken Hydroxy for four years and had no bad taste. I take 1 gm at night. I also fly to Portugal and back every few months and had no problems. I was told I could have an injection to thin my blood if I was flying long haul. Love to you. Lesley x

[Hidden]

I have had ET for 4 years take 2x500 Hydroxy daily and 3 at weekends and have never had a taste from it. I would suggest take it in the evening so that you sleep through any fatigue symptoms you may get. I fly long haul a couple of times a year, wear compression socks, keep exercising your legs throughout the journey and get up and walk round and stretch as often as you can.

[Kerri2]

I think it has a creepy chemical smell that you get a whiff of as you put it in your mouth and a little unpleasant taste as you swallow it but no lasting bad taste. Drink lots of water.

[lizzziep]

Hi, I have ET too. It was a heck of a shock when I was first diagnosed, especially after I went home and googled it - that was a big mistake! I believed everything I read. However this site/forum has been a life line, bringing sense and relief to most of my fears!

I've been on Hydroxycarbamide for nearly 3 years now, I had quite a few side effects at first but most have disappeared now. I take it in the evening just after my meal, that does help with sleeping the fatigue off. I also take aspirin in a morning.

My skin is drier, I use lots of body lotion, especially on my lower leg and feet, as I was warned about ulcers in my lower legs. My hair is slightly thinner too.

However my day to day life remains the same.

Best wishes

Lizzie

[Val_P]

Hi Val, I've had ET for 9 years and taking 2 gm of Hydroxy daily. I get a very dry mouth with the Hydroxy, I find this can give me a bad taste so it's really important to drink plenty. I also carry extra strong mints everywhere I go, as I find these help when I get the horrible taste.

I've never had any problems with flying. I also take Clopidagrol daily (alternative to baby aspirin).

[Mazcd Partner MPNVoice]

Hello garden41bulbs, it is a lot to take in when you are firs told about your ET, I would suggest that you read as much as you can on our website mpnvoice.org.uk, I am sure this will help you. With regards to travel, yes you can still fly but you will have to check with your haematologist first that you are fit to fly, they will check your platelets and blood pressure etc and will then advise you on when to take your medication, including aspirin if you take that, and whether or not to wear any travel socks/stockings, we have a lot of very useful travel advice on our website, including a travel and insurance leaflet you can download mpnvoice.org.uk/living-with.... Welcome to our forum. Best wishes, Maz.