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DiscussionEssential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Replies to "@Huronshores High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and..."
I can identify with your statement of feeling like your a doctor's nightmare. I was diagnosed with MAC, which is a non-infectious lung disease, and I have had asthma, and multiple lung issues for years. So I have at least two rare disorders. š Up till now, I have not had any problem with the Hydroxyurea except for heartburn. I take Zantac for that. Also 3 medications for the asthma. Recently had a flare up of the lung congestion/asthma after my platelets and white blood cells have been pretty altered. Guess my immune system is affected. I was 64 when diagnosed. 68 at present. Been battling with leg and calf pain... sometimes it feels like my bones are hurting. For 6 months I have done everything they have suggested and still having pain.
Hi there. Iām 74 and have been on hydroxyurea for 25 years. I had a TIA, Mini stroke when my platelets were in the 900 range.
Thatās when they put me on Hydroxyurea. I was told early on that there are downsides to taking this drug, but I felt that the prospect of having heart attacks and strokes weāre not an option.
My white count and hemoglobin are low, which makes me tired.
Find it hematologist that you trust and take advice from that doctor. Otherwise youāll get way too many opinions.
Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed with ET. Her platelets were over a million. She was started on a low dose of hydroxyurea (June 2018). After seeing a specialist, she changed to interferon ( just received her 2nd dose). The change was due to needing to be on hydroxyurea for the rest of her life and her platelets were down to around 800,000. I also wonder about diet. The first dr said it would not change things. The second dr encouraged a good diet and exercise. Wishing the best for you.