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← Return to New to Hydrea for ET
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Blood Cancers & Disorders | Last Active: 3 days ago | Replies (176)
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Aloha.. I have been taking Hydroxyurea 500mg daily for over 20 years. I still have my hair. It has worked well for me until recently. My condition has transitioned to P.V. so I am starting to take Besremi (Interferon) shots in about a month. I also take a Biotin supplement for my hair growth and it has really helped. I would rather stay on E.T. as a diagnosis, rather than move to Polycythemia Vera. Its a new chapter. I was diagnosed at 44 and tried anagrelide, but went back to Hydrea and its been 33 years of fighting to keep myself healthy.. and keep my hair. Well Wishes
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Your transition from ET to PV--was that new diagnosis from symptoms, blood tests or bone marrow biopsy? I was diagnosed with ET in June 2023 but had higher than normal platelets for years. Only taking daily aspirin since waiting for platelets to reach over 800 before starting HU. I saw hematologist/oncologist last week and shockingly was told actually might have PV. Platelets staying in 600s but WBC, RBC, hemoglobin and hematocrit are showing a trend of increasing every 3 months. Waiting 2 weeks for another hormone test results that might show probable PV. I've done a lot of research on ET but didn't know about this possibility of transition to PV. My doctor immediately ordered HU which I've just started but no discussion of other available meds.
How long from your diagnosis of probable PV did they recommend Besremi? Did HU work ok for a long time with PV or was HU only successful with your ET? This is all news to me--I was just getting comfortable at 73 to living with ET but in 5 minutes last week that all changed. There was no time for questions and I wasn't even prepared to ask questions about a new diagnosis. So back to Mayo chat research.