Me as well. Fortunately, I work from home four days so I can take care of whatever side effects. First pill today. I want to retire in three years, but life sure throws curve balls. I'm scared, but trying to look at this from a perspective that ET isn't life threatening, doesn't shorten life span, and this nasty drug keeps us from having complications. It's prophylactic. Keep posting how it's going and I will too. Good luck.
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.
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.
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.
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.
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.
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.
Thank you for replying just trying to determine if this is a world thing of this happening
The government made it a requirement and now no one wants to admit to the possible occurrence after covid. I will continue to be an advocate as I see it the government should be paying for medicine, blood draws, and bills
Chemo part scares me, does it take out your hair all these unknowns? I will be asking today. I read where they could do a blood draw. Again, your comment has made going to the dr today easier.
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 .
HU has been widely used for a long time -- not just for blood cancers, but also for sickle cell anemia and some "acute" cancers, including mouth cancers.
I was diagnosed at 69 and for me too, having to take a medication daily was new.
I do hope your doctor starts you on a low dose. That lets your body get used to HU with no side effects.
Are you also taking low-dose aspirin? If not, maybe bring this up when you see the doctor today. Aspirin keeps our platelet-heavy blood slippery, protecting us from cardiovascular issues.
Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
Thank you for replying just trying to determine if this is a world thing of this happening
The government made it a requirement and now no one wants to admit to the possible occurrence after covid. I will continue to be an advocate as I see it the government should be paying for medicine, blood draws, and bills
Chemo part scares me, does it take out your hair all these unknowns? I will be asking today. I read where they could do a blood draw. Again, your comment has made going to the dr today easier.
"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.
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 .
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.
Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
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Me as well. Fortunately, I work from home four days so I can take care of whatever side effects. First pill today. I want to retire in three years, but life sure throws curve balls. I'm scared, but trying to look at this from a perspective that ET isn't life threatening, doesn't shorten life span, and this nasty drug keeps us from having complications. It's prophylactic. Keep posting how it's going and I will too. Good luck.
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4 ReactionsI 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.
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3 ReactionsA thirty second intense headache? Would scare me into thinking it was a stroke. I took my first pill today, I'm a bit scared.
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2 ReactionsThank you taking my first pill this evening
I still work for the government hope to work another 3 years and retire. Jennifer
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2 ReactionsLife 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.
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9 ReactionsSome people experience hair loss. Others -- including me -- do not.
"Chemo" is a scary word. So think of the good things HU will do for you: protect your heart, restore your energy, safeguard your bone marrow.
My ET care is covered in full even by my stingy Medicare Advantage plan. Hope you too will have full coverage.
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3 ReactionsGetting this diagnosis is overwhelming.
HU has been widely used for a long time -- not just for blood cancers, but also for sickle cell anemia and some "acute" cancers, including mouth cancers.
I was diagnosed at 69 and for me too, having to take a medication daily was new.
I do hope your doctor starts you on a low dose. That lets your body get used to HU with no side effects.
Are you also taking low-dose aspirin? If not, maybe bring this up when you see the doctor today. Aspirin keeps our platelet-heavy blood slippery, protecting us from cardiovascular issues.
-
Like -
Helpful -
Hug
3 ReactionsThank you for replying just trying to determine if this is a world thing of this happening
The government made it a requirement and now no one wants to admit to the possible occurrence after covid. I will continue to be an advocate as I see it the government should be paying for medicine, blood draws, and bills
Chemo part scares me, does it take out your hair all these unknowns? I will be asking today. I read where they could do a blood draw. Again, your comment has made going to the dr today easier.
-
Like -
Helpful -
Hug
7 ReactionsThank 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 .
-
Like -
Helpful -
Hug
2 ReactionsWishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
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Like -
Helpful -
Hug
3 Reactions