← Return to Anyone living with Essential Thrombocythemia with JAK2?

Discussion
Comment receiving replies
Profile picture for julmo @julmo

@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.

Jump to this post


Replies to "@appraiser1946. I've been on anagrilide for about 14 mos. After many small dose increases, I'm now..."

Hi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and what’s been working for you to keep your platelet levels in the normal-ish range.
2.2 million was super high! It’s encouraging to see that anagrilide has been working well for you and that you’re not having any of the issues you experienced with the hydroxyurea. Wishing you continued success along your journey. I hope you’ll pop into more conversations!

What led to your diagnosis of essential thrombocythemia? Were you having symptoms previously or was this through routine bloodwork?