People living with ET and taking Hydrea: Anybody setting records?

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.

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.

Honestly, I don't know if I have any tips! It was a really rare condition back when I was dx by bone marrow biopsy in the early 90s, and there really weren't very many support groups on-line from which to gather information. I was initially very concerned. At that time, anagrelide was new, and the concerns about long-term usage of hydroxyurea were very high. I used HU for awhile, then tried AG, but had terrible side effects from AG, so went back on HU. I was being treated by a hematologist in Ft. Wayne, IN but decided to travel to Rochester Mayo to see an ET specialist there. He felt that being as young as I was (early 40s by that time) I could manage with only daily 81 mg aspirin. So, I went off HU but soon after had some frightening TIAs. That helped me decide HU would be the best option for me. A decade or so ago I made an appointment with Dr. Tefferi at Mayo Rochester to see if my current treatment protocol was best for me and to learn if I had the JAK2 mutation (which I do). He said I'd likely die of something else before I'd die of ET, so stop worrying! 🙂 Therefore, since that time, I've basically taken my 500 mg HU and 81 mg aspirin daily, gone for quarterly CBCs and regular checkups with my regular hematologist and lived normally. I doubt that anyone much knows I have this blood condition. My advice? Stay active and live happily. If you begin to have an issues, your body will tell you. Otherwise, there are much more serious things in my life to worry about! 🙂 I'm happy to field questions, tho, as it has been a journey with definite ups and downs. It's most frightening when one doesn't have information, I firmly believe!

I was just diagnosed two weeks ago. Am 46 years old. Jak2 positive. Have just started taking Hydrea and my platelets have gone from 594 to 498 in two weeks. I’m also a heart attack survivor which occurred (now I’m told) largely due to ET as I weigh 165 lbs and my cholesterol (and other indicators) are very good. I’d love to connect with you on your 30 years. I’m just reading this and it’s making me very happy to hear.

Welcome to Connect, @johngrudnowski. I’m a little envious to see you’re in Costa Rica…sunshine and warmth! I’m in the cold north of Wisconsin and Mother Nature is giving us the cold shoulder

It sounds like you’re responding very well to being on Hydrea for your ET. It’s one of those blood conditions that can go undetected until there is an event. In your case it was a heart attack at an early age. I know from experience that it can be unsettling to receive a diagnosis that may impact you for the rest of your life. So it’s really encouraging when you see positive experiences like @lefsequeen having had ET for 30 years and doing well!

Was it the heart attack that brought on all the testing and the discovery of the JAK2 mutation?
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I’m just so worried about “what are my platelet levels” is the medicine safe. I don’t want to have a stroke. I’m often fatigued, headache and nauseous. It’s scary

What is TIAs?

Diagnosed 11/19/2022 and started the med. The hematologist was watching the platelet level for the past 5 years. Red platelets reached 915 in November. I’m 68 years old I go to the gym daily and work per diem as a social worker.