Anyone living with Essential Thrombocythemia with JAK2?

Life is still good! 72 yo female, diagnosed about 2 years ago now. Platelets run mid-high 600’s on one baby aspirin every morning. Reached over 700 once, my doc talked about HU, but then we decided to wait as long as I exercised at least a couple times a week. Each of us is a little different, so work with your doc.

We still travel a lot, Europe almost every year. Took 3 weeks in Italy and Slovenia this year. My Heme doc says 2 aspirin/ day when we fly. Works for me 😊

Btw: I still work PT, and take it easy when I’m tired. Mostly my life has not changed. Read others posts and you’ll find yourself in good company. Blessings on all your days ahead.

Yes, I take 500 mg twice a day, 4 days a week. Started at 500 mg twice a day every day and gradually backed down to current dosage. Other than some short (less than 30 seconds) intense headaches while on the daily regimen,
I have had no side effects.

64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.

Thank you taking my first pill this evening
I still work for the government hope to work another 3 years and retire. Jennifer

Hello to you, with hugs.

"Afraid and mad" is where this weird, weird diagnosis leaves us.

Who even knew you could have too many platelets?

It's really scary. And unfortunately no one you know, probably not even your doctor, can help much.

Certainly there's suspicion that covid shots may be a factor.

But ET was identified more than 100 years ago. And people had it long before it was identified. There were no covid shots back then.

Sadly, no one yet knows what causes ET.

But others on this forum have lived with it for decades! It is NOT a death sentence.

It's also not a walk in the park. That's why taking HU (hydroxyurea) is important. For most of us, HU brings our platelet levels down.

This restores our energy and (some of the time!) relieves the terrible headaches ET can give us.

What will be your initial dosage? I hope you'll be started off with a low dose, then get careful monitoring (with blood draws) to see how HU is helping you.

Most of us like to take HU with food. We also find that drinking lots of water is good.

You have a million question, and this is where you'll find answers.

You're among friends, and we're all ET aliens together.

Can you tell me what OTC can be used for the itching and headaches? Tylenol and Benadryl okay with the 500 mg HU? I also take a statin and aspirin at night.

I learned I had ET at my annual Medicare checkup 2 years ago, my platelets were over 900,000. By the time I saw an oncologist 3 days later the count was over a million. They put me on 500 mg of Hydrea right away. Twelve months of weekly blood tests and varying doses of Hydrea later we have settled in on 4 days a week 1,000 mg Hydrea and 3 days a week 500 mg. Now a year after that my platelet count is down to 315,000, the lowest it’s ever been. I’ve had no obvious side effects or symptoms from the Hydrea or the ET and consider myself blessed for that. I stay active but am tired every day. It doesn’t keep me from doing things. It just takes longer.
My first oncologist told me everyone’s different, but if you’re like most people with ET when you die it won’t be because of ET*.
*as long as you take your Hydrea 😊

A thirty second intense headache? Would scare me into thinking it was a stroke. I took my first pill today, I'm a bit scared.

I thought so too at first, but my platelets have been climbing before 2021. It's genetic, or age. I popped my first pill today, with shaky hand. Believe me, this is hard to process.