What acceptable level of platelets do you shoot for on HU?

Posted by mjfp49 @mjfp49, Sep 19 3:42am

Hi, I read that a number of people say their doctor is content if the platelet count is in the high 400k or even 500k range on HU at a lower dose.
Is it really necessary to push the platelets as low as they can go on a higher dose?
Everyone seems to do a different dance with the drug depending on the doctor.
What's your experience?

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I am ET/Jak 2. My doctor is happy with my platelets in the 500s, down from a high of 800K. I take HU, 500 mg 4x week, daily iron, and baby aspirin am & pm. I am doing fine. Diagnosed age 69, now 72, and having a good life with family, friends, and hobbies.

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Profile picture for cindyem @cindyem

@cetzler
I didn’t start treatment until my spleen started aching due to the enlargement. My Mayo Clinic specialist put me on Ojjarra which has worked beautifully on my spleen and elevated platelets.
Best wishes on your journey.

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@cindyem
What was your platelet count when it affected the spleen? My H/Onc doctor was concerned about the spleen enlargement in the beginning of my ET treatment. My platelets were about 770. I had ultrasound and my spleen was normal size.
Now my platelets have been around 510-520. I am taking HU.

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I am 72 year old male with essential thrombocytosis, calreticulin positive, intermediate risk, no JAK2, and a platelet count of 866. I am taking a baby aspirin. My hematologist is following the National Comprehensive Cancer Network Guidelines Version 1.2026 which says that I should be prescribed Hydroxyurea once my count reaches 1M. I am also taking 100% allicin garlic, (three capsules per day, 180 mg, powder form). My count has decreased a little bit. Is it because of the garlic or was it low when tested, as platelet counts are always moving during the day? Based on this forum, everyone with counts as high as mine is on Hydroxyurea.

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Profile picture for hipsu5 @hipsu5

@cindyem
What was your platelet count when it affected the spleen? My H/Onc doctor was concerned about the spleen enlargement in the beginning of my ET treatment. My platelets were about 770. I had ultrasound and my spleen was normal size.
Now my platelets have been around 510-520. I am taking HU.

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@hipsu5
My platelets were over 700k and my white count was 13-14k. I was anemic and received iron treatment. Hydroxy urea caused my red count to suddenly drop again so I was immediately taken off that. The specialist at Mayo Clinic had my doctor order Ojjarra instead. After over a year on it, my platelets are 350k and my white count is 7,000. Hemoglobin stable around 12,5. I’m so thankful to have been put on this newer drug.

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Profile picture for sunnylane @sunnylane

I am 72 year old male with essential thrombocytosis, calreticulin positive, intermediate risk, no JAK2, and a platelet count of 866. I am taking a baby aspirin. My hematologist is following the National Comprehensive Cancer Network Guidelines Version 1.2026 which says that I should be prescribed Hydroxyurea once my count reaches 1M. I am also taking 100% allicin garlic, (three capsules per day, 180 mg, powder form). My count has decreased a little bit. Is it because of the garlic or was it low when tested, as platelet counts are always moving during the day? Based on this forum, everyone with counts as high as mine is on Hydroxyurea.

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@sunnylane
Hi thanks for sharing.
I think your Doc is on the right track.
This is a rare disorder and there's still lots to figure out.
We have different mutations driving the platelets...don't know if that makes a difference in starting HU.
I only take 1 garlic capsule perhaps I should up that a bit.
I've also learned that dark chocolate has anti platelet abilities for both aggregation and maybe suppression.
Just a piece once a day...not a whole bar .
I buy the Lindt bars which have right on the cover the percentage of dark chocolate.
Easy to break off a square.
Just added that to my diet.
Because this blood disease is not well known we need to do our own research.
All the best to you.

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Profile picture for cindyem @cindyem

@hipsu5
My platelets were over 700k and my white count was 13-14k. I was anemic and received iron treatment. Hydroxy urea caused my red count to suddenly drop again so I was immediately taken off that. The specialist at Mayo Clinic had my doctor order Ojjarra instead. After over a year on it, my platelets are 350k and my white count is 7,000. Hemoglobin stable around 12,5. I’m so thankful to have been put on this newer drug.

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@cindyem
Thanks for sharing...will keep it in mind.❤️

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Profile picture for sunnylane @sunnylane

I am 72 year old male with essential thrombocytosis, calreticulin positive, intermediate risk, no JAK2, and a platelet count of 866. I am taking a baby aspirin. My hematologist is following the National Comprehensive Cancer Network Guidelines Version 1.2026 which says that I should be prescribed Hydroxyurea once my count reaches 1M. I am also taking 100% allicin garlic, (three capsules per day, 180 mg, powder form). My count has decreased a little bit. Is it because of the garlic or was it low when tested, as platelet counts are always moving during the day? Based on this forum, everyone with counts as high as mine is on Hydroxyurea.

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Hi @sunnylane ,
I have high platelets and CALR also, but I am 67 and female. I declined Hydrea but do take low dose aspirin. Yes, most of those on this forum with high platelets do take Hydrea, but I do not.

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