Long term medication Hydroxyurea

I am seeing my doctor next month, I will be asking her if she can prescribe another medication. I can not deal with HU any longer, having too many side effects.

I was diagnosed with ET on May 26th of this year. I take 500mg of HU and 1 mg of Folic Acid twice a day along with baby aspirin. I have stabbing bone pain in my feet and hands. My doctor says it’s neither ET nor HU. I think he’s wrong.

MPNs are “orphan diseases”, so few people have them, therefore, not much research is done to cure them, they are simply managed.

Thank you for sharing your experience. I have been wondering about the whole “management” versus ‘cure’ of this disorder.
I’m sorry to hear you have so much pain:( it varies so much from person to person.

@1995victoria

I think that doctors just wing it based on the response of the platelets to the HU. I started out with 500 mg of HU daily. When my platelets didn't decrease much in the first two weeks, my doc wanted to change the medication. I dug in and asked if we couldn't wait for one month to see what happened. He agreed, but increased the HU to 500mg in the morning and in the evening. The platelets dropped 10% then, and in the next month another 10%. We're hoping for another 10% this month, then platelets will be at 400. He's going to let me play around with the medication at that point. I'm a control freak and like being part of the management team.

My dr told me 1,000mg right from the start, I was over a million.......I played around with HU, alternated 500 and 1,000 alternate days.....hardly moved, took the 2 caps at same time at night as he prescribed......and bingo the counts came down.....and have been down for 6 years now....

@janrossi
It is really good to hear you have been on HU for many years with no side effects. That is so encouraging. Did your white and red blood cells go down also as the platelets went down. I'm 79 and just started on HU in March 2026. I don't have any side effects either just the red blood cells going down a little. I am taking one a day for 5 days a week of the 500mg.

@claudie, hola, tomó HU hace 12 años y hace unos años empecé con dolor punzante en los huesos de los pies.
Se lo adjudicó a la hidroxiurea, Ya que soy una persona jóven, tengo 43 años actualmente.
Saludos.

Hi @claudie ,
I think it is great you are part of your management team!

@dharte47
Sorry for the delay in replying but your questions made me do some research during which I learned I can see my test results going back to 2014 so thanks!!

Anyway, my platelets have consistently stayed under 400 since early 2020; they typically range between 165 and 265. Even going back to 2014, there were only a few times they exceeded 400. Unfortunately I can’t see back further. When I first started on HU the dosage was tweaked quite a bit to find ‘perfection’ haha. I was surprised to find the letter from 1995 in which my PCP first informed me of them being 1.3M.

As for my white blood cells, this year they’ve been in the normal range but prior to that they were rarely normal, typically under 4.

My red blood cells have consistently hovered around 3, going back to 2014.

Anyway, based on my experience, I don’t feel there’s reason to be worried about HU. A couple of years ago I was invited to participate in a study of a different (unknown) drug but, when I met with them, it was suggested I stick with the HU since it has worked so well for me and I’ve had no side effects. When HU was originally recommended to me, I was told it had been used to treat sickle cell anemia for decades with minimal side effects so that gave me confidence in it.

Sorry this was so long and maybe tmi, haha, but I wanted to answer your questions as best I could. I think having confidence in your oncologist/hematologist and your PCP is very important as well as feeling comfortable asking questions (even stupid ones) and getting understandable answers. Don’t hesitate to get a second opinion if you have concerns. I did and ending up switching that doctor altho he moved elsewhere a number of years ago. At least he got me through my uncertainty. Good luck to you and feel free to reach out if you feel a need.

Thank you janrossi for your reply. I really appreciated reading your response in regards to my question. Has anyone else who is taking HU had issues with your red blood cell count going too low and what did your hematologist have you do. I have been taking one 500mg of HU 5 days a week. Does not seem like much compared to some people. I have been taking it since March and my platelets are going down slowly from 900 to 643 today. With red blood cells going down too much as well my hematologist said today to stop taking 5 HU and take only two a week and do a blood test in a month to see if the red blood cell count goes up. My platelets will probably go up also which concerns me. Thank you