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Anyone else have ET (thrombocytosis) with no gene mutation?
Blood Cancers & Disorders | Last Active: Feb 23 10:39am | Replies (10)Comment receiving replies
@janemc Thank you for those suggested questions. I will use them! The only challenge for me is that I am seriously allergic to aspirin and all NSAIDs. I get anaphylaxis response when taking it. So I guess the question is there another alternate blood thinner?
Good idea with the notebook and pen. I’ll also bring my sister to help listen and ask questions!
But I do suspect I’ll be put on HU.
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@mmkennedy I had a mild heart attack in August 2023, (probably caused by high platelets - my thinking) and in the hospital I was prescribed Brilique (ticagrelor) for one year. After that year my cardiologist prescribed Plavix (clopidogrel) instead of aspirin. I have no problem taking aspirin either, but now I am on Plavix. (= "A prescription antiplatelet medication (blood thinner) used to prevent serious cardiovascular events like heart attacks and strokes by inhibiting platelet aggregation.") I seem to tolerate Plavix just fine.
My ET/JAK2 was not diagnosed until February-March 2025, even though my platelets had been slowly going up since summer 2021. After my diagnosis I was prescribed HU 500mg 5 days a week. I delayed starting taking it until Dec. 2025. It has brought down platelets only little to ~ 640. My hematologist may be waiting for results from my bone marrow biopsy to adjust the dosage.
Hang in there.
- Hipsu 🙂