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People living with ET and taking Hydrea: Anybody setting records?
Blood Cancers & Disorders | Last Active: Mar 28 11:40am | Replies (63)Comment receiving replies
I’ve had ET for at least 30,maybe 40 years a kept my platelets down with Hydroxy with no symptoms or side affects until about 4 or 5 years when my anemia showed up. I was switched to Anagralide because the Hydroxy seemed to quit working. I need red blood cell transfusion every week or three I feel much better after them. Still not feeling like running around the block but I can tell when I’m needing blood. The threshold for getting blood is 22 hematocrit and the transfusions raise it to 24, 27 and once 30. 27 and 30 are good for 3 weeks. I can do anything I want, just not for very long.
Replies to "I’ve had ET for at least 30,maybe 40 years a kept my platelets down with Hydroxy..."
I am sorry that you are having so much trouble. I do think that I may be going down the road you are on.
Sending good vibes to you
Have you asked about Anagrelide for ET. Don't know about co-morbidity been taking it fir 20+ years effectively with no side effects...
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I am sorry to hear there have been some changes with your ET, but glad you found some workarounds. I have heard from other patients that HU can lose its punch. Just wondering if your doc gave you any info about whether that is typical for those who are longtime patients. I'm 15 years from symptom onset (elevated platelets). Keeping fingers crossed for you!