Hydroxyurea “Holidays” – How Long Have You Paused?

Five 500mg daily seems an extremely high dose to me. I would get a second opinion.

I've been on one 500mg daily since January of this year, but I am having some neuropathy now so my doctor told me to leave it off on Saturdays and Sundays for a month and come back for a recheck. I also get very tired by early evening, which is not normal for me. I am so happy to get to leave it off two days a week and hope my platelets don't sky rocket. I do not like having to take a chemo pill but I understand the need to keep my platelet count reasonable to prevent blood clots which can cause strokes and heart attacks.

I like my doctor, but my platelet count dropped very quickly to around 225,000, with both my white and red cell counts being at the very low end of normal. This week my red cell count was below normal, which I don't like.

I wish I could reduce my Hydrea dose so that my platelet count would be 450,000 or even 500,000 so my red and white cell counts would hopefully be higher! I did not have to begin Hydrea until my platelet count got to 600,000 so I don't see a need to keep my counts down so low, with platelets just above 200,000. I do take two low dose coated aspirin a day as well. I also put myself on a folic acid supplement as most of the info on Hydrea says doctors usually prescribe folic acid with Hydrea to help protect red blood cells.

I will follow this thread with interest. Prayers and best wishes for everyone dealing with this blood disorder and Hydrea.

@appraiser1946 I am 79 and have had ET for about four years. My doctor started me on 500 mg of hydroxyurea in the beginning. Later went to two because my plate count was going up. Yes, I am anemic and it is caused by the hydroxyurea. My oncologist took me off of hydroxy, and put me on an anagrilide. This did not work for me even taking 4 a day. My platelets skyrocketed to 900. He took me off of anagrilide and put me on 1500 mg of hydroxyurea a day. While I was on the other med my red blood count and my hemoglobin did go back to normal. Now that I am back on hydroxyurea and a very strong dose.. my red blood and hemoglobin is slowly coming down again. This is a roller coaster, and I do not know where it’s going to end. Good luck with your venture.

@appraiser1946 can you take one of the interferons?

I am asking the same question.. my platelets are back to normal .. took me off hydrourea.. doctor was baffled why I was so tired.. after reading comments this apparently is the norm.. wants to put me on the Ana… but those side effects.. are worse than the fatigue.. thoughts

I've been very stable in 400s on HU for 8 years (1 per day plus extra M-W-F), but red cells have dropped. Still normal, but toward low end. I feel ok. I take a multivit with folic acid. I am CALR, so doc is not worried if platelets run a bit high. However, HU can lose its effectiveness, so we're watching. I have a bad heart valve and cannot take anagrelide.

Well, I've been off of my Hydroxyurea (500mg) since June 7th. I am testing to see if I can replace it with cranberry juice. So far, the cranberry juice has kept my bloodpressure normal (I've also paused my Lisinopril for this), but I won't know whether my platelets have risen or remained in the normal range until July 3, when I have my next test. I feel fine, but then, back in 2014, when my ET was discovered, my platelet count was in the millions and I felt fine then, also.

@eloise999 my doctor has never talked about interferon. I am going to ask him about this med. Have you ever taken it?

When I was diagnosed in June 2025 my platelet count was 1.38 million. My doc put me on 1,000 mg Hydroxy, twice a day. 5 months later the count was down to 500,000 so I'm now on 500mg twice a day.

@appraiser1946 I have not. I am taking hydroxy urea. However, seems like many on these platforms use it and like it. Some report reduction in the mutant allele from use. You might look at the Health Unlocked forum where there are quite a few patient advocates for the interferons.

@jtcat7
Thank you for your reply. My platelets were in the 600s when I first started Hydrea in January of this year, one 500mg daily. Platelets had been steadily increasing for some time. It worked quickly to get mine down to the 200s (for which I'm thankful), but also lowered my red and white cell counts. I just turned 79 years old, btw.

The doctor (really his PA whom I also like) seemed concerned this week that I am already having neuropathy that has quickly spread from my feet to my calves, hands, and forearms, although it's not painful yet. Just tingly all the time. I'm hoping leaving off Hydrea on two days each week will help and not let my platelet count get too high. Apparently I'd be more comfortable with it in the 400s or even 500 than the doctors are! They both seem delighted with it in the 200s. We'll see when I go back in July.

My internist said that a low vitamin B12 level can also cause neuropathy, but my B12 test came back normal. However, in reading about all this I've since learned that taking a folic acid supplement can cause a B12 test to give false results. I didn't know that at my appointment and didn't think to tell him about my OTC folic acid supplement. I'm debating about phoning him but may just wait and see how my July oncologist appointment goes first.

I've now added a B12 over the counter supplement (on my own), but I know those don't always work with people my age, and they need shots for the B12 to be absorbed. Several of my friends have to take the shots.

It seems the more I try to do to help things, sometimes I may be unknowingly shooting myself in the foot!