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Hydroxyurea “Holidays” – How Long Have You Paused?

Posted by DanielHale @chaiyosef, Feb 13, 2025

My mother has ET and has been on Hydroxyurea (500mg) for about 7 months. Recently, due to GI issues and colitis seen on a CT scan, her hematologist advised her to pause Hydroxyurea while they assess whether it was causing the problem. She has now been off HU for a few doses and is waiting to hear back from her doctor on whether to restart it or consider an alternative.

For those who have taken a “Hydroxyurea holiday” (temporary break), how long have you paused? Did your platelets climb quickly, or did they stay stable? Did you eventually resume the same dose, adjust it, or switch to another treatment like Pegasys?

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jtcat7 | @jtcat7 | 2 days ago
In reply to @cec2 "@jtcat7 Thank you for your reply. My platelets were in the 600s when I first started..." + (show)
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@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!

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I am also 79 and had the same trouble with white & red cells.
My doctor was happy when I hit 500,000 and backed off from 2,000/day to 1,000/day.
Sorry to hear about the neuropathy... are you also diabetic? I have been T-2 for 26 years but no neuropathy.
I've heard that B-12 can be tricky and that test results aren't also accurate.

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alikay | @alikay | 1 day ago
In reply to @eloise999 "@appraiser1946 I have not. I am taking hydroxy urea. However, seems like many on these platforms..." + (show)
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@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.

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@eloise999 where do you find health unlocked forum ?
Thanks.

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garyr443 | @garyr443 | 1 day ago
In reply to @jtcat7 "When I was diagnosed in June 2025 my platelet count was 1.38 million. My doc put..." + (show)
Profile picture for jtcat7 @jtcat7

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.

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@jtcat7 Wow, sounds a bit extreme, even with your initial platelet count. Mine was in "the millions" and first I had to be tested to find out if I had the JAK2 mutation. Dodged that bullet, so no leukemia. Finally, after two or three months, I had a hematologist and he prescribed Hydroxyurea at 500mg per day. Then we had to play with the dosage being daily. Finally, after months of that, we settled for a dosage of 500mg daily for two consecutive days, followed by one day of two doses, then back to one dose daily for two days. So, since then, I've been taking 1 and 1 and 2, repeating this. It works for me most of the time, but changes I've made in supplements and diet have caused spikes that subsided back to normal after quitting whatever I had done. That included CoQ10, eating salmon and tuna, etc.

I'm doing the cranberry juice experiment for one month, until July 3, to see if it can keep my platelet count and bloodpressure normal. It's working with the bloodpressure but I won't see the effect on my platelets until July 3. If, by then, without Hydroxyurea, my platelet count is normal, I will continue with the cranberry juice. If not, then I'll resume taking the Hydroxyurea and the Lisinopril. I have read that cranberry juice can lower both bloodpressure and platelet count. Part of that information comes from reading dietary advice for people with Throbocytopenia (low platelet count). Those folks are scared to death of anything that lowers platelets, so whatever they do, I do the opposite. They avoid cranberry juice, so that says to me that it must be working to lower platelets. Other sources, including medical studies back this up. If there is anything I'm convinced will NOT happen, it's an increase in my platelets.

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mone83 | @mone83 | 17 hours ago
In reply to @appraiser1946 "@appraiser1946 I am 79 and have had ET for about four years. My doctor started me..." + (show)
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@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.

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@appraiser1946 I’m 83. On 500mg Hydra every third day. He did tell me the other meds have worse symptoms. I’m just so very tired all the time…nauseous once in awhile…foggy brain…etc and the others are worse? But counts are steady on the high side. 🙄

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