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@janemc

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.

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Replies to "Hello to you, with hugs. "Afraid and mad" is where this weird, weird diagnosis leaves us...."

Thank you for the helpful information. I am seeing the dr today to discuss first time since blood work came back
I question the chemo word throws me for a loop but I know there are a lot of people taking this bill
Always been healthy never had to take medicine but hearing from people like you has made this visit easier. Thank you .

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.