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.
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.
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.
"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.
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.
What's OK for me may not be OK for you. Please check with your own doctor to be safe!
That being said . . . a couple of days ago, an oncology physician's assistant approved my using topical lidocaine (creme, spray, patches) for pain. Applied to the back of my neck, lidocaine does help with headaches. It works through the skin, so it doesn't interact with medicines we've taken by mouth.
She also was OK with my taking a daily loratadine (Claritin) to ease my breathing.
The P.A. strongly recommended substituting acetaminophen (Tylenol) for the naproxen (Aleve) I've been using for serious pain. Why? Because Tylenol interferes less with the important work aspirin does on our blood.
She also said I should avoid taking a pain killer at the same time as HU or aspirin.
Our ET diagnosis means we can't be casual about the use of OTC products . . . . aren't we lucky?
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 😊
The headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
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.
Hi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
I've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
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Thank 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 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 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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Helpful -
Hug
3 ReactionsMe 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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Like -
Helpful -
Hug
4 ReactionsCan 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.
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Like -
Helpful -
Hug
1 ReactionWhat's OK for me may not be OK for you. Please check with your own doctor to be safe!
That being said . . . a couple of days ago, an oncology physician's assistant approved my using topical lidocaine (creme, spray, patches) for pain. Applied to the back of my neck, lidocaine does help with headaches. It works through the skin, so it doesn't interact with medicines we've taken by mouth.
She also was OK with my taking a daily loratadine (Claritin) to ease my breathing.
The P.A. strongly recommended substituting acetaminophen (Tylenol) for the naproxen (Aleve) I've been using for serious pain. Why? Because Tylenol interferes less with the important work aspirin does on our blood.
She also said I should avoid taking a pain killer at the same time as HU or aspirin.
Our ET diagnosis means we can't be casual about the use of OTC products . . . . aren't we lucky?
Hoping you'll quickly learn what safe for YOU.
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Hug
4 Reactions“This won’t be the thing that kills you” was one of the first things my doctor said after my diagnosis.
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6 ReactionsThe headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
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Like -
Helpful -
Hug
7 ReactionsHi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
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Like -
Helpful -
Hug
3 ReactionsI've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
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Helpful -
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3 Reactions