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How long you can live taking Hydrea (Hydroxyurea)?

Posted by stacerb1 @stacerb1, Apr 20 12:20pm

I was recently diagnosed with ET, JAK2 mutation. Currently taking 500mg Hydrea and low dose aspirin. Question: Does anyone know how long you can live on Hydrea?

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ontheverge | @ontheverge | Apr 22 4:25pm
In reply to @janemc "Hello, stacerb1! ET diagnosis is a shock. Remember that every low-dose aspirin and every capsule of..." + (show)
@janemc

Hello, stacerb1! ET diagnosis is a shock. Remember that every low-dose aspirin and every capsule of HU is helping you.

Others on this forum have taken HU for 15 or more years. As debhammel has said, HU works well to lowers our platelet counts. And when the counts go down, we get some relief from the exhaustion and headaches that are part of ET.

What dose have you been started on?

You must have a million questions. To find more ET conversations, just type "ET" in the search bar at the top of this page.

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After adjusting to a dose of 500m HU daily, my platelets have been down in the low 400K range for months but I am just as exhausted as ever. Iron panels are normal. Folate and B12 are at the top of the normal range.

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3 replies
janemc | @janemc | Apr 22 6:43pm
In reply to @ontheverge "After adjusting to a dose of 500m HU daily, my platelets have been down in the..." + (show)
@ontheverge

After adjusting to a dose of 500m HU daily, my platelets have been down in the low 400K range for months but I am just as exhausted as ever. Iron panels are normal. Folate and B12 are at the top of the normal range.

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ontheverge, congratulations for getting back into a normal range on your platelets!

I'm so sorry you're still exhausted. You really have to experience ET fatigue to understand it, don't you?

I continued to feel like a limp noodle for a long time after HU started lowering my count. Alas, you're not alone.

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janemc | @janemc | Apr 22 6:45pm
In reply to @ksyren "I am ET JAK2+ and 79 years old. I too have experienced the sharp, sudden headaches...." + (show)
@ksyren

I am ET JAK2+ and 79 years old. I too have experienced the sharp, sudden headaches. The first one lasted for hours and since then have subsided to perhaps 5 or 10 minutes and sometimes not at all. They begin within about an hour from taking the HU and are very clearly not from any other cause - the timing is predicable. They do not keep me from any planned activity. I take 500mg a day M-W-F. My platelets have decreased steadily from 647 to 387 inside of 3 months. And my doctor has also made it clear, at least with what they know right now, the HU is for life.

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Wow, congratulations on getting your platelet count down so quickly!!!

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nohrt4me | @nohrt4me | Apr 23 7:42am
In reply to @ontheverge "After adjusting to a dose of 500m HU daily, my platelets have been down in the..." + (show)
@ontheverge

After adjusting to a dose of 500m HU daily, my platelets have been down in the low 400K range for months but I am just as exhausted as ever. Iron panels are normal. Folate and B12 are at the top of the normal range.

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The experts tell you to exercise. It does help, but feels really counter-intuitive. When you have fatigue, that's the last thing you want. Cutting back on sugar and starches may help. I tend to be pretty strict about bedtime. I know a few people with really crushing fatigue have tried Adderall after discussion with their docs. I drink coffee in the morning and have another jolt about 3 pm. But have learned to pace myself. Otherwise I just feel jangled and can't sleep.

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 23 9:02am
In reply to @nohrt4me "The Weather Channel is a great time-waster. "I'll go stretch as soon as they show me..." + (show)
@nohrt4me

The Weather Channel is a great time-waster. "I'll go stretch as soon as they show me that footage of giant hail and I get the hourly round-up on weather someplace that I have never been and oops, here's a dog rescue I need to see."

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Seriously…we need a LOL or 😂 reaction emoji for some of these posts! I’m with you on being so ‘easily called away’…

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1 reply
nohrt4me | @nohrt4me | Apr 23 10:49am
In reply to @loribmt "Seriously…we need a LOL or 😂 reaction emoji for some of these posts! I’m with you..." + (show)
@loribmt

Seriously…we need a LOL or 😂 reaction emoji for some of these posts! I’m with you on being so ‘easily called away’…

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My cousin in Virginia has a whole bunch of ailments. He retired from NOAA a few years ago and seems to be glued to The Weather Channel. He never calls on holidays or birthdays, but if we get bad weather, he's on the horn asking us if we lost power and when am I going to organize another family reunion.

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 23 11:57am
In reply to @nohrt4me "My cousin in Virginia has a whole bunch of ailments. He retired from NOAA a few..." + (show)
@nohrt4me

My cousin in Virginia has a whole bunch of ailments. He retired from NOAA a few years ago and seems to be glued to The Weather Channel. He never calls on holidays or birthdays, but if we get bad weather, he's on the horn asking us if we lost power and when am I going to organize another family reunion.

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He sounds like a character. 😅

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cathy8 | @cathy8 | Apr 24 10:18am

Hi all.having been diagnosed with two mutations jak2 and calf ihave been on double dosage of hydrea also injection to stimulate bone marrow into producing healthy cells...felt absolutely dreadful for past two weeks today had my visit turns out my haemoglobin has dropped to 8.6 so going in for blood transfusion next week..good news my platelets have come down from.700 to 450..adviced to drink plenty water..so hopefully transfusion will help

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1 reply
cathy8 | @cathy8 | Apr 24 10:20am

Apologies to all my last post should read the two mutations are jak 2 and Calr

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1 reply
gigi05 | @gigi05 | Apr 24 1:13pm
In reply to @nohrt4me "My cousin in Virginia has a whole bunch of ailments. He retired from NOAA a few..." + (show)
@nohrt4me

My cousin in Virginia has a whole bunch of ailments. He retired from NOAA a few years ago and seems to be glued to The Weather Channel. He never calls on holidays or birthdays, but if we get bad weather, he's on the horn asking us if we lost power and when am I going to organize another family reunion.

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@nohrt4me Hilarious!

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