Newbie

[Jlards]

Hi I'm just new here, I've been diagnosed with ET nearly 12 months ago. I was 47 when first diagnosed now 48. I was put on interferon 3 times a week then increased to daily but didn't respond to it and then side effects were not good.

I've just swapped to Hydrea 2 a day and I'm going ok but very tired and I have sweats and I can feel a little nauseated sometimes.

I guess I'm still adjusting from never taking meds to now taking meds..

And from healthy and fit to tired and unfit

[Kelly2]

You cannot imagine how much empathy I have for you. I am a very busy person and I MUST feel good everyday to go about my daily life. I don’t have any symptoms from my PV and the thought of acquiring nausea, tiredness etc. makes me sad, powerless and so scared. The majority here are taking it and got used to it which is a big comfort. I am thinking of ways to start it i. e. on a weekend, at noon and having seasickness pills near me. Welcome and keep in mind that being with others who are in a similar condition as you and asking for support makes it a lot easier.

[Jlards in reply to Kelly2]

Thanks so much for replying.. I take 2 hydrea at night to lessen the side effects. It works better this way for me. Takes time to adjust but this is now my life and I've just got to adjust as best I can

[Mazcd Partner MPNVoice in reply to Jlards]

Hello Jlards, I am sorry to hear this, it might take you a while to adjust to the Hydroxycarbamide, I hope you feel better soon. Best wishes, Maz

[Jlards in reply to Mazcd]

Thanks Maz I am sure I will

Julie

[Kelly2 in reply to Jlards]

Yes I have read about taking it at night. The thing is that one is not able to drink water for around 7 hours. Does it matter?

[Jlards in reply to Kelly2]

At this stage I'm only new to this drug and this dosage so I'm unsure if it matters to take them at night. It works for me at this stage.

[Superwoman]

Hi Jlards, welcome to the forum your body will soon get used to the drugs, we all know what you are going through, for me I had been so unwell for many years, but once diagnosed with ET JAK2 Posative and put on Hydroxycarbamide, I must admit my life has improved been on it now five years nearly, I now keep fit, eat well and drink plenty of water at least 2ltrs a day so feel that it has been a life changer for me, my blood these days are all normal long may that last.

One thing I will say, is that I reacted badly to many drugs over the years, but pleased to say that I tolorate Hydroxy very well which has amazed me.

Jean

[Jlards in reply to Superwoman]

Thanks Jean this is fantastic news. I can see the common thread of exercise and water. I will work on these areas and diet can have a bit of improvement as well. Thanks for the advise

Julie

[Superwoman]

Of course the other thing is, as time goes on, your dose might be lowered, this happened to me I was taking 2 a day, now I am down to 1 a day and 2 on Sat and Sun. Works well for me. And the exercise certainly gets the adrenaline going no matter how little you do it all helps.

Jean