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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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preacherswife1977 | @preacherswife1977 | Nov 27, 2023

Welome to the group. I also have ET. Have had high platelets for over a year but was just diagnosed this past August. I am on low dose aspirin and 500 mg of Hydrea on MWF. I was very tired at first getting use to the meds. Doing ok now. Have a tired day once in a while but thankful for every good day. I go this coming Thursday for another blood draw and see where I am now. Praying the best for you!!!

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1 reply
nohrt4me | @nohrt4me | Nov 28, 2023

I've had ET-CALR for 15 years. I'm on 1,000mg 3xweek + 500mg the rest of the time. On that dose for last five years. Feeling OK, with the ups and down with fatigue and brain fog, skin/hair/nail changes (get a good moisturizer). Drinking 64 oz water every day + daily exercise and fresh air help. Just got out my old wool blanket so I can continue to sit on the porch for in afternoon to watch the birds at the feeder. Michigan winter has arrived! Watch your stress levels. I don't find that stress increases my platelets, but it is easier for me to get overwhelmed if I don't pace myself.

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jewelfaux | @jewelfaux | Nov 28, 2023

I'm on 1000mg HU every other day and 1500mg on opposite days along with 325mg aspirin every day. I was diagnosed with ET about a year ago. I, too, experience fatigue but that's about all (that I can attribute to the meds. All my other issues are due to age and bad luck. I feel that it's worth feeling tired to avoid the stroke or heart attack that my ET could cause. You have to decide what's most important to you and what you are willing to risk. I'm not one to take chances and try to trust my doctors. I hope that you are fortunate enough not to have any other side effects besides fatigue as some others are not.

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2 replies
magnolia1949 | @magnolia1949 | Nov 28, 2023
In reply to @preacherswife1977 "Welome to the group. I also have ET. Have had high platelets for over a year..." + (show)
@preacherswife1977

Welome to the group. I also have ET. Have had high platelets for over a year but was just diagnosed this past August. I am on low dose aspirin and 500 mg of Hydrea on MWF. I was very tired at first getting use to the meds. Doing ok now. Have a tired day once in a while but thankful for every good day. I go this coming Thursday for another blood draw and see where I am now. Praying the best for you!!!

Jump to this post

thank you so much! Praying your lab work Thursday will all be good!

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1 reply
magnolia1949 | @magnolia1949 | Nov 28, 2023
In reply to @nohrt4me "I've had ET-CALR for 15 years. I'm on 1,000mg 3xweek + 500mg the rest of the..." + (show)
@nohrt4me

I've had ET-CALR for 15 years. I'm on 1,000mg 3xweek + 500mg the rest of the time. On that dose for last five years. Feeling OK, with the ups and down with fatigue and brain fog, skin/hair/nail changes (get a good moisturizer). Drinking 64 oz water every day + daily exercise and fresh air help. Just got out my old wool blanket so I can continue to sit on the porch for in afternoon to watch the birds at the feeder. Michigan winter has arrived! Watch your stress levels. I don't find that stress increases my platelets, but it is easier for me to get overwhelmed if I don't pace myself.

Jump to this post

I agree how important it is to stay positive; I walk every day weather permitting, drink plenty of water and eating healthy. I tend to worry about things (children, grandchildren) but I'm not as bad as I used to be about things that I know are out of my control. I think the 1,000mg of hydroxy tends to make me feel very tired alot of the time , but I am very thankful that is the only side affect I have. It could certainly be alot worse. Hope you keep doing well!

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1 reply
magnolia1949 | @magnolia1949 | Nov 28, 2023
In reply to @jewelfaux "I'm on 1000mg HU every other day and 1500mg on opposite days along with 325mg aspirin..." + (show)
@jewelfaux

I'm on 1000mg HU every other day and 1500mg on opposite days along with 325mg aspirin every day. I was diagnosed with ET about a year ago. I, too, experience fatigue but that's about all (that I can attribute to the meds. All my other issues are due to age and bad luck. I feel that it's worth feeling tired to avoid the stroke or heart attack that my ET could cause. You have to decide what's most important to you and what you are willing to risk. I'm not one to take chances and try to trust my doctors. I hope that you are fortunate enough not to have any other side effects besides fatigue as some others are not.

Jump to this post

I am very thankful that fatigue is the only side affect I have. I am blessed to have a wonderful oncologist that takes the time to talk to me and doesn't rush our visit. I'm so glad I found this website and can share with people that have ET and how they are doing. I don't know anyone who has ET or even heard of it. I hope you continue to do well!

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carefor | @carefor | Nov 28, 2023

I was diagnosed with ET 7 months ago 500 mg hydroxyurea I take apixaban 5mg 2x day I added after checking with my pharmacist & doctor- folate 800 - Triple Magnesium Complex-Glycinate-Malate-Taurate
I have good days and bad days. Not as fatigued after adding these products. I hope you have a good day!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 28, 2023

@magnolia1949, I'd like to add my welcome. You might also appreciate these related discussions:
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- Essential Thrombocythemia (ET): foods, diet, nutrition?
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/
- People living with ET and taking Hydrea: Anybody setting records?
https://connect.mayoclinic.org/discussion/anybody-setting-records/
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
You can many more discussions related to ET using the search function here https://connect.mayoclinic.org/search/?search=

Keep asking questions. You're not alone. 🙂

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nohrt4me | @nohrt4me | Nov 28, 2023
In reply to @magnolia1949 "I agree how important it is to stay positive; I walk every day weather permitting, drink..." + (show)
@magnolia1949

I agree how important it is to stay positive; I walk every day weather permitting, drink plenty of water and eating healthy. I tend to worry about things (children, grandchildren) but I'm not as bad as I used to be about things that I know are out of my control. I think the 1,000mg of hydroxy tends to make me feel very tired alot of the time , but I am very thankful that is the only side affect I have. It could certainly be alot worse. Hope you keep doing well!

Jump to this post

Thank you! I found that I had more energy on the HU, but this seems to vary among patients. I was also started on just 500 mg per day for six months or a year (I forget exactly) and boosted to current dose. So I had time to get used to it. Yes, worry tends to creep in with fatigue. Probably something we should talk more about. I knit when I feel I'm falling into that pattern. It keeps off the worst of the whim-whams.

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eileen11108 | @eileen11108 | Nov 29, 2023
In reply to @jewelfaux "I'm on 1000mg HU every other day and 1500mg on opposite days along with 325mg aspirin..." + (show)
@jewelfaux

I'm on 1000mg HU every other day and 1500mg on opposite days along with 325mg aspirin every day. I was diagnosed with ET about a year ago. I, too, experience fatigue but that's about all (that I can attribute to the meds. All my other issues are due to age and bad luck. I feel that it's worth feeling tired to avoid the stroke or heart attack that my ET could cause. You have to decide what's most important to you and what you are willing to risk. I'm not one to take chances and try to trust my doctors. I hope that you are fortunate enough not to have any other side effects besides fatigue as some others are not.

Jump to this post

Hi @ jewelfaux,

Does your hematologist recommend 325 mg aspirin daily? Almost everyone seems to be on 81 mg low dose aspirin daily.

Thank you, Eileen

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