Essential Thrombocytosis: What amount of hydroxy do you take?

Hi Leonard
I also tested for a mutation it’s a monoclonal protein spike. So with that and jak2 prone to leukemia but statistically my hematologist said I’m more likely to have a heart attack from my cardiac artery disease. Lol

Oh and if u feel worse with that dosage u tell him u want it lowered to where ur feeling more comfortable. I’m not a doctor but 550 is not that high and by him giving u the dosage he suggests it’s not going to cure u. Sometimes they don’t think about how the patient feels. U control ur body not him.

Even lately I feel dizzy as taking hydroxy twice a day as platelets high around 920000
Your experience helped me as to why I feel drowsy after starting this medicine in morning too. Hope speedy recovery to ALL

Everyone, don't forget that ET itself (like most other blood cancers) cause fatigue.

My unscientific explanation is that your body is working overtime producing all those excess cells and abnormal megakaryocytes, trying to keep circulation running with sludgy blood, and dealing with an inefficient "blood factory" in the bone marrow due to fibrosis in some cases. ET is also overloading your system with histamines that make you tired and itchy. And the headaches and dizziness slow a lot of people down.

HU can relieve that a bit in some people, as long as the med doesn't cause gastric upsets or other side effects.

I agree with leonard01 that bad fatigue days make you focus more on the disease, especially if you were always a high energy person.

People keep telling me how good I look and how lucky no am that it isn't worse. Some days I agree. Some days I get depressed knowing there's no cure. The mental aspect of dealing with chronic diseases is hard to carry some days.

Thank you for your kind words. Yes, taking hydroxyurea at night really does help with sleep and one is not as dizzy or drowsy in the morning . Even with just one 500 mg. tablet in the a.m. had me bumping into walls when going to other rooms in the house. My platelets were a bit over 1 million and now I am at a high normal level of 450,000. Had blood drawn last week but I am not sure if my blood platelet count has decreased.

Wishing you a speedy recovery too!!

Thanks for your reply.
Me Taking Hydroxyurea 500 mg twice a day as platelets high at 920000.
Dr asked to take twice a day for two weeks and then he will guide further .

Good to hear that docs are monitoring platelets more closely when HU is prescribed and adjusting doses downward if it works. Dosing was all over the place even just 10 years ago. Standards of care seem to have improved a lot.

I’m also thankful for this group! My very supportive husband found this for me. I was diagnosed with ET and Jak2 mutation in 2019, but decided with my dr to just keep an eye on it and continued with bloodwork every 4-6 months. (During this time I was helping with my brother who has Mantel Cell Lymphoma. And caring for my mother in law, who has Alzheimer’s.). Fast forward to September 2023, my bloodwork numbers were very high, so my dr referred me to a hematologist/oncology. To date, I have had 3 phlebotomys and take Hydreau (2 500mg) each day. I have also had a bone marrow biopsy, where I am positive for Polycycemia Vera (PV). Tried taking the Hydreau in the afternoon, but was so fatigued I had to take a nap every day. Have since moved to taking it in the evening after dinner. This works much better for me. My numbers are back within range, so no phlebotomy for the last two appointments, but still on the same milligrams. I’m still pretty fatigued, only a nap once in an awhile and I try to walk outside at least 20 minutes when I can. This whole thing definitely brings me down, but I rely on my faith to get me through. My next appointment is next week, so we will see where I’m at.

Hello Magnolia1949……I too have ET and MPN diagnosed five years ago. I started with 500mg daily and a few months ago changed to five days a week because of anemia and fatigue. Seems to be working okay. I still have fatigue but I think that it is here to stay. I take my meds at bedtime and it helps with the nausea. If have blood work every month and right now my red count is low. I think it is a balancing act with different results every month.
I too am grateful for this site. I do not post often but I check it every day. Good luck with everything…….Claire

I’m like you Claire. I don’t post often but I follow closely every day. I appreciate what everyone shares. Thank you all! 🥰