Hydroxycarbamide

[Waterwoman]

H,

I have ET and was dreading going on Hydroxycarbamide. I take 1 a day and I started four weeks ago.

My platelets were 980 and now they are 340. I take vitamin D and B everyday and my diet is very strict. I gave up coffee, alcohol, lactose, diary and yeast. ( my choice) Sounds like I eat nothing but I’ve discovered amazing healthy alternatives, which I would have never discovered before all this.

This site has helped a lot. We are definitely all different and it’s finding what is best for oneself. Long may this last!

Merry Christmas Everyone.

[Dovme]

Merry Christmas glad it’s going well for you

[socrates_8]

Ditto...

All the very best to you & yours Waterwoman...

Steve

[stevenjust]

Hello,

I too will be going back on medication in January after being off it for over two years. I was on Hydroxy before for 8 years, 4 tabs mon-fri, 3 at weekend. I did have side effects, however I kind of got used to them. I need to make a decision now either hydroxy or interferon. Hopefully just having your one tablet will not cause you too many side effects, if it does though make sure to tell your medical team and they could try you on something else.

My platelets are currently at 1400.

Good luck and I’d be interested to hear more about your new diet.x

[Jlah]

Impressed that you’ve managed a drastic diet change - did you follow a particular recipe book/guide? Jx

[Waterwoman in reply to Jlah]

Hi, no I’ve always been intolerant to lots of things so took it on myself. I eat plain foods and try different baking recipes online and modify them slightly. I love coffee and that is the one thing I find hard, but it kept me awake at night ... so it had to go!!

😊

[Mazcd Partner MPNVoice]

Hi Waterwoman, very good news, really pleased for you that you are doing so well.

Merry Christmas to you. Maz x

[Mostew]

Good to hear how it’s going with you.

I will remember you when I need to make decision re. Taking meds .

Coffee is my one thing I don’t give up . Sitting now having daily second small strong black cup ... no more after that.

Have you had any side effects from Hydoxy?

[Waterwoman in reply to Mostew]

No I haven’t so far. It’s early days yet but I hope it remains so .

[hunter5582]

Glad to hear all seems to be going well. Merry Christmas to you too.

[Meatloaf9]

Sounds great, best of luck to you on your journey. Keep us all informed as to how it goes with the HU. Live long and prosper.

[Whitehair51]

I was diagnosed with ET with calr 2 months ago. I had a 1.1 million count and was prescribed 500 mg hydrea 3 x a day and my count came down to normal. So far, the only side effect I've experienced is some fatigue. I can't believe that I haven't had more and wonder if it's still coming.

[tracey13]

Great news hydroxy is working well for you!!

My husband can't drink caffeine he's changed his diet to. Well he's having Christmas off eating nice foods let's the healthy eating begin after Christmas.

Tracey

[Waterwoman in reply to tracey13]

Thank you... long may it last!Yes I might indulge slightly too

Have a lovely Christmas 😃

[tracey13]

Yeah it's been a strange year this covid mental strain has had more impact to mental minds than their illness.

Merry Christmas to you too.

[Maxpenny]

That is reassuring I just hope I don’t get any side effects, well not many. At the moment keeping looking at clock and counting how long it is since I took it. It’s quite a thing

Best wishes