← Return to How fast do you start to feel hydroxyurea symptoms?

Discussion
Comment receiving replies
@ronegeorge

I've been taking 600mgs of hydroxyurea (Droxia formulation) daily for myelofibrosis for the past 6 yrs. No side effects. Perhaps I've had extra fatigue, but it is hard to distinguish where it comes from. I think the HU has lowered my platelets during the 6 yrs, and I have been in the normal range the past 6 months. I use the lid of an empty medicine bottle (which can be turned upside down) so I don't have to touch the capsule--I just put the capsule into the lid and then tip the lid so the capsule falls into my mouth. So far I haven't dropped any of the capsules. I also think that the HU has helped to prevent enlargement of my spleen. I'm JAK2 positive, and my NGS test also was positive for mutations of ASXL1, TET2, and RUNX1. I'm 77.

Jump to this post


Replies to "I've been taking 600mgs of hydroxyurea (Droxia formulation) daily for myelofibrosis for the past 6 yrs...."

Welcome to Connect, @ronegeorge. Thank you for sharing your encouraging experience with using Hydroxyurea to control your myelofibrosis. It sounds like the HU is preventing other potential side effects from your condition as well. It’s stories like yours that can be so inspirational for anyone who is hesitant to take these valuable treatments.
How often do you have repeat blood work?

I was diagnosed with ET and put on 500 mg a day to lower platelets from About 530. I was immediately adversely affected with extreme fatigue and major hair loss. I told my dr I wanted to lower dose or change meds. . He said no. I did it anyway and found a new dr—a specialist in myelofibrosis which is what my initial Dx had progressed to after a bone marrow biopsy and bone scraping.
I stopped taking HU for a while and yes platelets rose to 610. So with new dr agreed to take 2 a week and platelets went down to 460. Hair loss stopped when HU stopped. Hair loss resumed at a much lower rate after resuming. And now seems to have stopped.
My take so far is you have to have a say in how meds affect you, and I don’t think anyone,even specialists, can predict exactly if and how meds like HU work. For me, I’m 84 and otherwise healthy. The hair loss is a nonstarter unless someone can convince me 600 platelets will do me in sooner than Father Time.