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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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mdterp76 | @mdterp76 | Feb 13 10:25am
In reply to @preacherswife1977 "I am taking 500 mg Hydrea on MWF. Still a little high but hematologist doesn't seem..." + (show)
@preacherswife1977

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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The MPN Foundation is the one researching ET extensively. It's free to belong and they have wonderful, free resources including emails and YouTube seminars. I especially find information from Dr. Ruben Mesa very easy to understand and up to date. Highly recommend!! https://www.mpnresearchfoundation.org/essential-thrombocythemia-et/

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jroyer | @jroyer | Feb 13 10:49am
In reply to @kik1 "Good morning, Lol you are so correct! That’s a great affirmation for me to meditate on!..." + (show)
@kik1

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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I’m glad you appreciated my humor—sometimes it gets lost in the writing. 🌼

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kapow | @kapow | Feb 13 11:17am

I am so bummed. My platelets have been on the rise and are now back up to 564, so my hematologist has decided to increase my hydroxyurea by 1 tablet a week. I now will be taking 1000 mg 3 days (MWF) and 500 mg 4 days (TThSS) . It is not the increase that bothered me so much, but I have a trip planned to go to Maui. I live in Canada, so need travel insurance, and am afraid that I won’t be covered should the unforeseen happen. Has anyone else been in this situation?

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kik1 | @kik1 | Feb 13 9:02pm
In reply to @jroyer "I try not to think of it as poison, especially when much of what we eat..." + (show)
@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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Have you experienced any stomach issues? When I first started my appetite was suppressed but three months later it’s not.
Have you changed the way you eat? I very poor in drinking water but I do drink hint water and probiotic water. (Karma) My doctor has not mention any kind of diet to follow.

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sudutoo | @sudutoo | Apr 13 8:51am

So, I began with 500mg HU D and it was working ok, but then my platelets elevate so I was placed on 500mg 2 X D except two days I only take 500mg. I also take an adult aspirin which I chew and then swallow with water.

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1 reply
memere09 | @memere09 | Apr 14 7:12am
In reply to @sudutoo "So, I began with 500mg HU D and it was working ok, but then my platelets..." + (show)
@sudutoo

So, I began with 500mg HU D and it was working ok, but then my platelets elevate so I was placed on 500mg 2 X D except two days I only take 500mg. I also take an adult aspirin which I chew and then swallow with water.

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I take 500 mg daily and an extra 500 mg on Monday Wednesday and Friday. I find that I am foggy headed on the mornings after the extra pill

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sudutoo | @sudutoo | Apr 14 10:05pm

I sometimes feel like going to bet at 6 or 7 and wake up at 3-4 and my days seem to go better.

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