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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (377)Comment receiving replies
I have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a day. I am 79 years old. I of course, have fatigue and deal with that on a daily basis. It is not extreme, but very annoying. My red blood Count has been at 2.6. My oncologist has taken me off of the hydroxyurea because it is bringing down my red blood count and not controlling my platelets enough. He has put me on anagrelide. I have to take this med three times a day. It has caused some digestive and diarrhea problems. At my last blood track, my platelets had come down, and my red blood count has gone up slightly. I would love to hear from some other people that are taking the anagrelide. Thank you so much and I hope to hear from someone
Replies to "I have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a..."
@appraiser1946. I've been on anagrilide for about 14 mos. After many small dose increases, I'm now on 2 mg a day. My platelets now range between 320 and 500, which is a vast improvement from 2.2 million when I was diagnosed. I'm very sensitive to the med with many side effects and have a hard time with dose changes. My hematocrit is on the high side at about 53. It's a balancing act for me between tolerating the med side effects and quality of life. As you mentioned, fatigue is a big one, as well as muscle pain, shortness of breath and heart palpitations. I can't take hydroxyurea as the side effects were severe and I was hospitalized for a month. I think it's a matter of adjusting and accepting that life has changed. Good luck with your side effects and hope they reduce with time.
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@appraiser1946 Hello! I have been on Hydroxyurea since 1992. I am 68 years old and we did try a stent with Anagrelide for about 7 years. My Oncologist took me off because he was reading that it could cause myelofibrosis if used for too long. He put me back on Hydroxyurea 500 daily and that worked well for 25 years. Now my counts are not as controlled and I have converted to PV. I am now on Hydroxyurea 1000mg daily. I like the Anagrelide time period. Not as much hair loss or fatigue. I was only on one pill a day at that time. Ask you doc about long term use, but in the mean time it sounds like the right direction to keep your RBC up. Do you have low Iron as well? Leene