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What are pros of hydroxyurea vs other methods of lowering platelets?
I am 47 & received my official diagnose today. I am JAK 2 mutation only & after a bone marrow biopsy & further genetic testing there are no other mutation of genes. My hematologist started me on low dose Aspirin at my initial visit. She mentioned starting hydroxyurea at me next appointment. Since I'm low risk she is leaving it up to me on when to start it. I don't react well to most prescription meds so my question is, has any one tried other ways to lower platelets & symptoms? For instance, diet or other supplements? I've also read that CBD can help with inflammation, increases blood circulation & has anticoagulant properties & can help with a lot of the symptoms.
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I have CML (chronic Myeloid Leukemia). Before beginning Hydroxyurea 500 mg twice a day, my platelets were about 2,000. After two months of Hydroxyurea they are now down to 337. I will begin a clinical trial this month and will be taking a TKI drug instead of Hydrea. Good luck with your treatment. It worked wonders for me.
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4 ReactionsI wish you had had a different experience, but I thank you for sharing your story.
I did t start taking hydroxides until I reached 60. Age was my only risk factor - no other medical issues
I did t start taking hydroxides until I reached 60. Age was my only risk factor - no other medical issues I took 1 500mg per day as I did not like being fatigued all the time. My RBC and WBC counts are always low. My platelet count is always too high for my hematologist, last cbc it was 900+. That has now become an issue as I have to have hernia surgery and need count down to 500.
I have just read this article re alternatives to Hydroxyurea. Has anyone else heard of this?
https://metabolichealing.com/essential-thrombocytosis-effective-alternative-treatments/
No but it may be worth checking out. I see my hematologist this Friday. I'm going to speak with her about it. I can't use hydroxyurea due to an allergic reaction when I initially tried it. I'm considered low risk for blood clots & the hightest my plates have been so far is mid 700's so she took me off it & I only take a baby Aspirin for now.
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1 ReactionHi, great to read positive feedback that you were able to go off Hydrea. I had a couple of breaks off from it by chance as I had an accident (injury) couldn't take any medication as my stomach just couldn't even tolerate simple paracetamol for pain relief.
That was back in April 2023 & my platelets were 298.
I got a reprieve from hydrea until next test which was 9 May 23..they went up to 438 yet well within the normal range. Pattern was much the same throughout that year.
My last test was on 25th March this year, platelets were 400 but was left on same dose of Hydrea which is 500mg 3 days per week, am due retest in June. My HCT is within the normal range.
Since I have been taking the Hydrea steadily without a single missed dose, I am exhausted, am falling asleep in afternoons every day now which never happened before, is a fight to stay awake which is extremely depressing. I get about 9 hrs sleep every night, sometimes more. Looks like Hydrea may be the culprit as am not very active. Just wondering if anyone else is fighting to stay awake like this?
I need to highlight this problem at my next consultation as life isn't worth living when I feel so exhausted all the time.
Mags