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I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more
Lorraine: So true. It feels like “gaslighting” in a way
In any event, at this point I’m convinced that Occular Migraines were definitely related to my ET, and taking HU seems to have eliminated… read more
Once I began taking hydroxyurea my tinnitus has increased immensely and I am experiencing a lot of temporal, head and eye pressure discomfort/pain. I was wondering if these are normal side effects of the drug. My ears started ringing 8 years ago but not with the current intensity. I have a meeting with my hematologist this week to discuss my blood work after a month on hydroxyurea. All comments appreciated.
Thanks for the information. I have been on 1000mg hu for 4 months and a phlebotomy every 3 weeks. My hematocrit was .62 when I started and after this weeks bloodwork I am know at .45. I have no… read more
I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.
Have had high platelet counts for over 25 years. Was taking Anagrelide for many years. Tried Hyderabad but I couldn’t tolerate. Once JACK 2 discovered, went on Jakifi and platelets have been under… read more
My friend has PV 18 years, on high doses of Hydroxyurea until it quit working so she was started on Jakalfi about 2 yrs ago, her numbers are kinda crazy, her cholesterol has gone up,up,up but she… read more