My platelet count has increased after a year on Hydroxyurea (HU)

Posted by mikemp @mikemp, Apr 6, 2025

I have been taking HU (1000mg per day) for one year for essential Thrombocytosis . I have experienced little side effects and my platelet count have steadily gone down.
My latest blood tests showed an increase for the first time since I started HU. It went from 360 to 420.

Has anyone experienced fluctuations in their platelet count. Is it normal?

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Profile picture for mumblipeg @mumblipeg

I have been taking HU for almost 9 months now. Platelets were at 1200 in March 2025 with diagnosis of ET. My dose of HU has fluctuated over the months, starting at 500 mg daily, to 1000 mg MWF, reduced to 500 daily when platelets got to 314, then 500/ 3 days on MWF but platelets went up to 446 and now 500 mg 4 days/week and platelets are rising again at 489. So my magic number might be 500 mg daily. I am on the watch and wait schedule. My goal is to take as little as possible of HU. I tried Fosomax with it for Osteoporosis but bone and joint pain got worse. I dropped Fosomax and am trying to cover Osteoporosis naturally with exercise and weight lifting as well as clean eating. The roller coaster is crazy and now a breast lump. I am trying to cope. Biopsy coming up.

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@mumblipeg From all of us on Hydroxyurea, this is a common occurrence. I stayed at 850, with dose changes and now steady dose, I’m going up and down between 350-450. I’d hold off and let them play with the meds again being this number isn’t really dangerous currently. Are you getting a Bone marrow biopsy soley because your platelets are creeping up? Do some research. Ask questions. Mainly will your treatment change from the results. Good luck!

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Profile picture for irishnanny3 @irishnanny3

@mumblipeg
So sorry you are dealing with so much I’ve been on hydroxy since 2018 and it’s kept my platelets in a good place. Jakafi was my doc’s preferred choice.. as it’s supposed to be most beneficial.. but I had too many side effects Maybe it’s an option for you. Hope
your biopsy results gives you good news. In my prayers

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@irishnanny3 Thank you! I know things will level out soon. And I know that I’m not alone. Hoping for the best.

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Profile picture for mumblipeg @mumblipeg

I have been taking HU for almost 9 months now. Platelets were at 1200 in March 2025 with diagnosis of ET. My dose of HU has fluctuated over the months, starting at 500 mg daily, to 1000 mg MWF, reduced to 500 daily when platelets got to 314, then 500/ 3 days on MWF but platelets went up to 446 and now 500 mg 4 days/week and platelets are rising again at 489. So my magic number might be 500 mg daily. I am on the watch and wait schedule. My goal is to take as little as possible of HU. I tried Fosomax with it for Osteoporosis but bone and joint pain got worse. I dropped Fosomax and am trying to cover Osteoporosis naturally with exercise and weight lifting as well as clean eating. The roller coaster is crazy and now a breast lump. I am trying to cope. Biopsy coming up.

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@mumblipeg

May all go well!

Sending lots of love and good wishes!

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It took two years on hydroxyurea for my platelets to go from 800s to stay in the 400s. Had to have HU adjusted twice in that time. Been on HU x 7 years now. Mine will sometimes jump to 500s, but mostly they stay between 430 and 480. For those just starting out, watching the fluctuations can be nervewracking, but most people stabilize.

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Profile picture for nypara66 @nypara66

@mumblipeg From all of us on Hydroxyurea, this is a common occurrence. I stayed at 850, with dose changes and now steady dose, I’m going up and down between 350-450. I’d hold off and let them play with the meds again being this number isn’t really dangerous currently. Are you getting a Bone marrow biopsy soley because your platelets are creeping up? Do some research. Ask questions. Mainly will your treatment change from the results. Good luck!

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@nypara66 Thank you for responding. I am getting a breast biopsy; just another stress that likely makes my platelets whacky. I hope to stabilize on a dose that I can live with so that other concerns can be addressed. So grateful to be able to hear from others on this forum. I know that I’m not alone.

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Profile picture for mumblipeg @mumblipeg

@nypara66 Thank you for responding. I am getting a breast biopsy; just another stress that likely makes my platelets whacky. I hope to stabilize on a dose that I can live with so that other concerns can be addressed. So grateful to be able to hear from others on this forum. I know that I’m not alone.

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@mumblipeg I had breast biopsies in both tatas. I was lucky it wasn’t cancer. A few years later the lumps grew and I had them surgically removed. Early detection is the key and yes, all of that can mess with your platelets so take it one step at a time. Good luck and stay positive!

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Profile picture for mumblipeg @mumblipeg

I have been taking HU for almost 9 months now. Platelets were at 1200 in March 2025 with diagnosis of ET. My dose of HU has fluctuated over the months, starting at 500 mg daily, to 1000 mg MWF, reduced to 500 daily when platelets got to 314, then 500/ 3 days on MWF but platelets went up to 446 and now 500 mg 4 days/week and platelets are rising again at 489. So my magic number might be 500 mg daily. I am on the watch and wait schedule. My goal is to take as little as possible of HU. I tried Fosomax with it for Osteoporosis but bone and joint pain got worse. I dropped Fosomax and am trying to cover Osteoporosis naturally with exercise and weight lifting as well as clean eating. The roller coaster is crazy and now a breast lump. I am trying to cope. Biopsy coming up.

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@mumblipeg
Praying for your biopsy results and that your platelets count will stabilize. Hugs sent your way!

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Profile picture for nypara66 @nypara66

I take Hydroxyurea for PV. My platelets vary monthly! Anywhere from 390to almost 500. I’m 58 and for now my doctor said under 600 is acceptable for me. I don’t have any other health issues thus far and I’m sure that’s a consideration. If they do go higher he said all we do is up dosage. I currently am doing well 3X a week and hope to stay that way hehe Try not to worry. I don’t think anyone’s platelets stay the same when doing monthly labs.

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74 and have PV, platelets change some every three months. When they went up out of the normal range a slight adjustment in the HU brought them back. I went from 500mg daily to 500 / 1000 every other day. Who knows? Tides? Moon phase? Sun spots? We change all the time....

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