Hydroxyurea and Low White Blood Cell Count

[Sheena2020]

I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been keeping my blood counts stable for a while. Since December 2023, my white blood cell count has been fluctuating, but definitely on a downward trend. Last week it was only 2.2. My doctor is recommending to cut down the Hydroxyurea to 500 mg on two of the days. I don't do well having phlebotomies, and really don't want to have to have one next month, so I only cut back the Hydroxyurea on one day. I am also concerned that my WBC is so low.

Has anyone with Polycythemia Vera had experience with their white blood cell counts dropping so low?

[plum27]

I have had fluctuating, low wbc count for many years. Initially I was taking hydroxyurea but switched to pegasys several years ago and my wbc count remains low. Usually slightly below normal but sometimes lower. Haematologist is aware but does not recommend any changes to deal with it. GP advises to get in touch promptly if I get an infection but other than Covid and occasional minor skin infections I haven't had any problems that I can relate to the low wbc count. So I just accept it as my new normal.

[Sheena2020 in reply to plum27]

Thank you for your reply. It is good to know it just may be my new normal, although I plan to talk to the doctor about it at my next appointment.

[JP1952]

I have just checked on my previous blood results and all my WBC were below normal so I too think this is my normal. The lowest I found was 3.2 but the last one up to 4.5, this is on Rux. My haematologist appears to be happy with this but he does advise to avoid infections and if I do pick up anything I check my temperature daily.

[Sheena2020]

Thank you for checking! I guess this is what the medication does. I have been advised to wear a mask if I am near anyone with an infection.

[gdpone]

I would highly recommend following your drs orders and not changing dosing on your own. And I’m not trying to be patronizing but you don’t have the training to determine what dose you need or not. Low WBC can be a serious risk depending on how low.