Essential Thrombocytosis: What amount of hydroxy do you take?

Posted by magnolia1949 @magnolia1949, Nov 27, 2023

I am so thankful I found this group! I was diagnosed with Essential Thrombocytosis about 3 years ago. At first I was taking 500mg of Hydroxyurea once a day. I have gradually had to increase the dosage because my platelets were still increasing. Now I'm taking two capsules a day (1,000 mg daily). My main issue is I have extreme fatigue. Does anyone else out there take this amount of hydroxy and if so what side affects are you having?

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@janemc

I am so sorry for what you and your wife are going through, btwheels. Hope you will have additional information soon.

Was starting on low-dose aspirin recommended?

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Yes, she started with a low-dose aspirin, but then switched to the Hydroxy.

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@btwheels

My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th that showed the following numbers:
Platelets - 1019
HGB - 17.5
RBC - 58.6
HCT - 53.3
LY - 14
ANC - 8.1
With all these number on the High/high with the low LY we are not scheduled for an appointment until Jan 19th.
We called last week after the JAK2 positive for additional information and to ask about more testing, thinking a bone marrow biopsy would be next. I received a return call from the Oncology Pharmacist with a prescription for Hydroxyurea at 2-500mg tablets twice a day. 2000 mg per day seems high just starting out according to other posts I have read?
The frustrating part is that it certainly looks like she has an MPN, but have been given no more information on whether it is PV, ET, or Myelofibrosis.
I guess we will find out what the next step is on Jan 19th, and I am guessing the Dr wants to see if this high dosage of Hydroxyurea with push the numbers lower after 2 weeks.
Just frustrated with the lack of information, but at least so far, not much in side effects.
Thankful for that.

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I am taking 500 mg Hydrea on MWF. Still a little high but hematologist doesn't seem to be concerned. On one of my visits I saw the PA. She advised me to contact the Leukemia & Lymphoma Society. They sent me a lot of info and most of it did not pertain to me but what did was helpful. I have Essential Thrombocythemia its a lot to understand and believe me I am no where close to understanding it all. Wishing your wife the best.

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@btwheels

Yes, she started with a low-dose aspirin, but then switched to the Hydroxy.

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Almost all of us take aspirin along with the hydrea...is your wife still taking the aspirin? If not, I suggest you double check at the next appointment.

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@rjgregory440

Almost all of us take aspirin along with the hydrea...is your wife still taking the aspirin? If not, I suggest you double check at the next appointment.

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To echo Rhonda: I take an 81-mg aspirin every day, as well as HU 500mg 3x weekly. (My platelets are much lower than your wife's, only in the 600-700 range.)

That tiny amount of aspirin alters the blood almost instantly, helping protect our cardiovascular systems.

HU also helps offset the effect of too many platelets in our blood, but it takes a lot longer to kick in.

I would recommend calling your doctor's office today, not waiting until next week. I was started on aspirin even before my diagnosis was confirmed.

If aspirin is to be taken, always select a low-dose and a coated variety.

For me at least, taking aspirin and HU only with food is better.

We're rooting for you!

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@rjgregory440

Almost all of us take aspirin along with the hydrea...is your wife still taking the aspirin? If not, I suggest you double check at the next appointment.

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Thank you, that is a question we hope to ask the advise nurse tomorrow morning!

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I just started 500mg daily in January, when I turned 60. We have been watching my numbers for a few years now. My dr always said at age 60 he would put me on this to lower count to avoid clots. I was at 900ish when put on. After 2 weeks down to 700ish. I have had no side effects so far.

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From what I understand 500mg is the lowest dose manufactured. I too am on 500mg. The only side effects I have are hot flashes again (I'm 71 and thought I was done with that) and an occasional sunburn sensation on my shins. Only my shins. This dose has brought my numbers down as well in short order (about 9 months from 900 to around 600). So we are happy with the result and reduced my dose to one pill 6 days a week (I have a day off now--we will do my numbers in another 3 months). I think we are lucky for science to help with this disorder. Good luck to you! jd

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I’m 56 and started in Nov with one pill a day. When I reached 842 that is when he put me on the medication. In Dec I was down to 542 so I’m curious what it will be this month. (A total of 3 months) I cringe 😬 every morning when I take the pill. Thankful there is something to help but feel like I’m slowly poisoning myself. I have tingling in my feet and I’m tired.
I have ET with the mutation gene JAK2. Anyway still adjusting to all of this, I was just completing my yearly check up last year.
Best to each of us!
KK

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@kik1

I’m 56 and started in Nov with one pill a day. When I reached 842 that is when he put me on the medication. In Dec I was down to 542 so I’m curious what it will be this month. (A total of 3 months) I cringe 😬 every morning when I take the pill. Thankful there is something to help but feel like I’m slowly poisoning myself. I have tingling in my feet and I’m tired.
I have ET with the mutation gene JAK2. Anyway still adjusting to all of this, I was just completing my yearly check up last year.
Best to each of us!
KK

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I try not to think of it as poison, especially when much of what we eat these days is probably worse. I take my pills at night. I have no idea if that’s better or worse—it’s just easier for me to remember. Maybe try to view that pill as another day above ground—like Pitbull said, “ Any day above ground is a good day!” ❤️

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@jroyer

I try not to think of it as poison, especially when much of what we eat these days is probably worse. I take my pills at night. I have no idea if that’s better or worse—it’s just easier for me to remember. Maybe try to view that pill as another day above ground—like Pitbull said, “ Any day above ground is a good day!” ❤️

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Good morning,
Lol you are so correct! That’s a great affirmation for me to meditate on! I appreciate you for replying. Here’s to another day above the ground! 😊

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