Hi! Diagnosed with Essential Thrombocythemia (ET) 6/22; level 768; Began taking 500 MG Hydroxyurea, daily. My 3rd testing in 6/22, my levels were 420 (had continuously gone down); was so excited for my next visit! Thought that decreasing pattern would mean under 300 level and could take HU every other day! Wrong.On 9/20/23; levels were at 716. Now taking HU, alternately, 500 MG every other day; 1,000 MG in-between days. I was very disappointed to see my platelet level rise, again, and had to increase dosage. Hoping
yours will continue to go down. Good luck!

I wish there was a precise answer to what number of platelets are dangerous. Also, my hematologist and internist are very experienced, but not specialists in MPN's, as far as I know. I don't know if there is an MPN specialist in Los Angeles. My doctors want me to take as much HU as is necessary to put my platelets in normal range. I fear that may be more than I can tolerate. From reading descriptions on this website, I think PV and ET illnesses and responses to meds vary greatly. Maybe also different meds are appropriate for different ages. In my case, ET due to CalR mutation, I began with about 700 platelet count when diagnosed 3 years ago at age 69. HU almost immediately started bringing platelets down. My hematologist and internist weren't happy when platelets were usually in the 400's and then jumped to around 525 after two years of one 500 mg HU pill each day. They want my platelets to be in normal range. Internist said I was at risk of a stroke and should be taking two 500 mg pills each day, which I resisted. I have struggled with the doctors as I had no side effects with one pill a day but had troublesome side effects whenever I tried taking two per day. This improved somewhat when I took the two pills at different times of the day, instead of at the same time. Currently, I've gotten used to one pill each day and a second pill on Monday, Wednesday, and Friday, with helpful advice from a gastroenterologist regarding side effects. I find increases in HU discouraging but now that I realize increases in plateIets can be expected from what I only recently found out is a slowly-progressing form of cancer. Hoping better drugs come along soon.

I want to give an update on February 24, 2024. I am 72 years old and have been treating CAl-R mutation ET since 2020. I struggled all last year with awful digestive problems when my 500 daily HU capsules were increased to two per day on some days. My hematologist insisted there was no alternative med to HU. Then in December I switched to Dr. Noam Drazin, a hematologist/MPN specialist with Cedars Sinai Med Center in Beverly Hills. He disagrees with the other hematologist and immediately switched me to daily Anagrelide, while gradually reducing HU. The bad side effects almost instantly disappeared while platelets continue to go down. I'll be done with HU soon. A few people on this website have had problems with Anagrelide, but for me, it's the answer. Best wishes to all. Illnesses and responses to meds differ for people on this website, but it's great for providing info and encouragement.

Diagnosed with ET JAK2 in June 2023. Took HU 500mg for 5 days a week. platelets in 500s. On day nine, i felt too sick to continue HU. Both the MPN specialist and my local onc/hem warned me I was at great risk of a thrombosis event. Had some wonderful advice on Health Unlocked, a UK website . A couple of people suggested taking 500 mg. 3 times a week. I finally succumbed after about 2 months to HU 3x a week . I still don’t feel well on HU but great improvement over 5x a week. First week platelet went from 575 to 474, wk 2 - 474 to 426, wk3- 426 to 412. Will not have another blood draw until end of Dec. Hopefully this trend will continue until Bromedemstat is approved. I read they have fast tracked Bromedemstat for ET. Finally a med for Et. I am not a candidate for inf because of depression and hypothyroidism.
Best wishes to all and hoping this helps someone that is miserable on HU.

I think by 3rd month mine were down, 500 mg 1 per day with low dose asprin too.