1. < Blood Cancers & Disorders

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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klcc | @klcc | Dec 8, 2023
In reply to @bluegrasspv2018 "Hello, I do not have ET but I do have PV which is the ugly sister..." + (show)
@bluegrasspv2018

Hello, I do not have ET but I do have PV which is the ugly sister of ET. PV is one of the MPNs. I became a member of the PV club in 2018. I originally took 500 mg of Hydroxyurea "Hydra" that is what my doctor calls it twice a day. My platelets are under control so now I am taking 500 mg only once a day in the morning. I have not noticed any difference. I have super fatigue around 7 pm every day. I eat dinner then hibernate like a bear all night. I plan all my brain-intensive activities in the morning. I go to a gymnasium 3 times a week and feel much better because of it. I volunteer a lot at my military veteran's clubs and stay active. Just turning 65 and plan to be around for a long time. I love to watch the bluegrass grow. Good luck to you from the heartland of America, Kentucky USA.

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Have you considered taking your pill at night?

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claire39 | @claire39 | Dec 8, 2023
In reply to @kapow "Merry Christmas to you too Claire, from your Canadian neighbour to the east (New Brunswick) I..." + (show)
@kapow

Merry Christmas to you too Claire, from your Canadian neighbour to the east (New Brunswick)

I take 500 mg 5 days a week and 1000 mg on Saturday and Sunday. I’m wondering if my fatigue could be age related, instead of a side effect of hydroxyurea…..I am 69, and slowing down in a lot of things, even though I still exercise 4 or 5 times a week, trying to stay ‘fit’. But I have found I can’t do nearly as much as I used to be able to do in the same length of time. Efficiency is a thing of the past! And I need to write down all the chores that I want to get done! 😉 But I have to say there is a feeling of satisfaction when I get to check them off! 😂

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Hello Kapow….I am pretty sure that the fatigue is mainly from the meds but also from blood cancer.
I find that I am very fatigued, by noon, to the point that I have to get into bed to rest properly. I don’t push myself the way I used to. Now that WINTER is here I am happy to hybrinate…..

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leonard01 | @leonard01 | Dec 9, 2023
In reply to @claire39 "Good morning Bluegrasspv2018……I take 500mg five days a week, originally I took 7 but was reduced..." + (show)
@claire39

Good morning Bluegrasspv2018……I take 500mg five days a week, originally I took 7 but was reduced because of extreme fatigue. It seem to have helped but I still am fatigued more than I would like to be. Every day is a struggle and I usually have to go to bed early, sometimes in the afternoon but I deal with it accordingly. Good luck to you from Ontario, Canada………land of snow and ice, lol………Claire

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Hi Clare39
Where in Ontario are you from ?
I’m in Toronto ON ! Would love to connect with you sometime!
Diane

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1 reply
claire39 | @claire39 | Dec 9, 2023

I have gone from 7 meds per week to 5, but that changes depending on my blood work…….500mg plus 81mg aspirin. Still have low hemoglobin but otherwise doing okay

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claire39 | @claire39 | Dec 9, 2023
In reply to @leonard01 "Hi Clare39 Where in Ontario are you from ? I’m in Toronto ON ! Would love..." + (show)
@leonard01

Hi Clare39
Where in Ontario are you from ?
I’m in Toronto ON ! Would love to connect with you sometime!
Diane

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Hello Diane…..
I live in Perth, Ont. I am about 60 kilometers west of Ottawa..

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hariom1961 | @hariom1961 | Dec 10, 2023

Taking Hydroxyurea 500 mg twice a day . Morning fatigue and dizziness there off and on . Present platelets count 920 . Have been asked to take for two weeks then do blood work

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ttown | @ttown | Dec 10, 2023

Hi Everyone.....Wishing you all the warmest, family filled holidays. Since my platelet count has dropped back into the normal range, for the time being, my oncologist has me on hold at 4 hydroxyurea 500 mg a week. That part seems to be working......Getting this diagnosis of ET Jak2, was alarming..... What is new, is the intense areas of itching, that although I scratch a lot, I have never abraded my skin....I scratch through my clothes. What I do have is very big bruises after a couple of days. In addition to that, I have developed positional vertigo......very disconcerting. I just have to remember not to turn my head too fast....my eyes move back and forth as they try to focus...just rolling over in bed can cause this. I frequently am dizzy without the vertigo feeling.....more light headed type of feeling. I guess I need to get used to this as it is part (possibly) of the side effects for some of us who are taking the hydroxyurea. At least my platelet count is normal, so I am not looking at clot or stroke possibilities. I am so grateful! Blessings to all of you during this holiday season, and thank you for this very informative and helpful website. Ginger

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2 replies
gmacookie | @gmacookie | Dec 11, 2023
In reply to @ttown "Hi Everyone.....Wishing you all the warmest, family filled holidays. Since my platelet count has dropped back..." + (show)
@ttown

Hi Everyone.....Wishing you all the warmest, family filled holidays. Since my platelet count has dropped back into the normal range, for the time being, my oncologist has me on hold at 4 hydroxyurea 500 mg a week. That part seems to be working......Getting this diagnosis of ET Jak2, was alarming..... What is new, is the intense areas of itching, that although I scratch a lot, I have never abraded my skin....I scratch through my clothes. What I do have is very big bruises after a couple of days. In addition to that, I have developed positional vertigo......very disconcerting. I just have to remember not to turn my head too fast....my eyes move back and forth as they try to focus...just rolling over in bed can cause this. I frequently am dizzy without the vertigo feeling.....more light headed type of feeling. I guess I need to get used to this as it is part (possibly) of the side effects for some of us who are taking the hydroxyurea. At least my platelet count is normal, so I am not looking at clot or stroke possibilities. I am so grateful! Blessings to all of you during this holiday season, and thank you for this very informative and helpful website. Ginger

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I have been having problems with itching too. My upper back actually feels like something is crawling under my skin.
I was diagnosed with ET in 2014. I am currently on 500 mgs everyday and two on Mondays and Thursdays. I also take a baby asprin everyday. The bruising is awful. I have been able to keep my count under 800 sometimes as low as 600.
When I was diagnosed it was called a blood disorder. I was a little taken aback when I started hearing it called a blood cancer.
No one has ever given me an explanation of why it happens.

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ger63 | @ger63 | Dec 11, 2023
In reply to @ttown "Hi Everyone.....Wishing you all the warmest, family filled holidays. Since my platelet count has dropped back..." + (show)
@ttown

Hi Everyone.....Wishing you all the warmest, family filled holidays. Since my platelet count has dropped back into the normal range, for the time being, my oncologist has me on hold at 4 hydroxyurea 500 mg a week. That part seems to be working......Getting this diagnosis of ET Jak2, was alarming..... What is new, is the intense areas of itching, that although I scratch a lot, I have never abraded my skin....I scratch through my clothes. What I do have is very big bruises after a couple of days. In addition to that, I have developed positional vertigo......very disconcerting. I just have to remember not to turn my head too fast....my eyes move back and forth as they try to focus...just rolling over in bed can cause this. I frequently am dizzy without the vertigo feeling.....more light headed type of feeling. I guess I need to get used to this as it is part (possibly) of the side effects for some of us who are taking the hydroxyurea. At least my platelet count is normal, so I am not looking at clot or stroke possibilities. I am so grateful! Blessings to all of you during this holiday season, and thank you for this very informative and helpful website. Ginger

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You should report the dizziness to your Md. I am betting Physical Therapy can assist with the dizziness, especially if you say your eyes are moving back and forth when you turn in bed. There are various treatments the PT can give you.

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1 reply
ttown | @ttown | Dec 11, 2023
In reply to @ger63 "You should report the dizziness to your Md. I am betting Physical Therapy can assist with..." + (show)
@ger63

You should report the dizziness to your Md. I am betting Physical Therapy can assist with the dizziness, especially if you say your eyes are moving back and forth when you turn in bed. There are various treatments the PT can give you.

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Thank you for that info - after reporting my symptoms to my oncologist, he suggested that I needed to replace electrolytes (gator aid)...which I did for a month with no results. I will be seeing my family doctor in about two weeks and will report this info to him. Fortunately, it does not affect my everyday life, except when I roll over in bed and bend over to pick something up. I love this very informative website and being in touch with others who have experienced similar issues.

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