Has anyone tried anagrelide? If so what was your thoughts on this med?

Posted by dwilson072516 @dwilson072516, Aug 14 8:15am

My husband did not respond well to hydroxyurea or Jakifi. He is about to start anagrelide once he gets the prescription. He has Jak2 and nothing has helped his numbers, right now he is about to hit 7 million. Which seems to be on a steady increase. Anyone try anagrelide? If so, what are your thoughts and how did you do on it?

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preacherswife1977 | @preacherswife1977 | Aug 14 9:23am

I tried it but could not take it. It caused palpitations

nancyra | @nancyra | Aug 14 9:50am

I was on it for 5 years and did quite well with little side effects. So if you can tolerate it I found much less side effects than HU
I recently came off it as I started having afib events. My hem does not think it was from the Anagrelide but when taking a blood thinner you absolutely cannot stay on it. Serious interactions

dwilson072516 | @dwilson072516 | Aug 14 10:23am

In reply to @preacherswife1977 "I tried it but could not take it. It caused palpitations" + (show)

@preacherswife1977 thank you for the reply

dwilson072516 | @dwilson072516 | Aug 14 10:24am

In reply to @nancyra "I was on it for 5 years and did quite well with little side effects. So..." + (show)

@nancyra thank you for the reply

lynnebgraham | @lynnebgraham | Aug 14 5:57pm

Hi, I was on Anagrelide for over 10 years and only because my haematologist left the clinic I was seeing, the new haematologist put me on HU. They could not give me Anagrelide. So for about 18 months I was on HU. My hair thinned out quite a bit and being out in the sun, even with sun protection and proper clothing, I could feel the sun burning my skin. Uncomfortable feeling to say the least. I also suffered more from fatigue during that time. My second haematologist left and I aksed my GP to refer me to the Holman Clinic so I could go back on Anagrelide. After a couple of months my platelet levels are within normal again. While I was on HU for 18 months, they never got back down to normal range. I am so happy that I am now back on Anagrelide. Side effects: fatigue, but not as bad as when on HU.
As with any medication, tell your doctor of any side effects you may get. Good luck and hugs.

dwilson072516 | @dwilson072516 | Aug 14 6:52pm

In reply to @lynnebgraham "Hi, I was on Anagrelide for over 10 years and only because my haematologist left the..." + (show)

@lynnebgraham thank you for sharing!

mikecaldwell | @mikecaldwell | Aug 16 10:16am

@dwilson072516 When I was first diagnosed with ET (subsequently confirmed with Jak2) in 2005, I was hesitant to take HU and asked my then hem/onc about anagrelide. He prescribed it and I took it for 8-9 years until it started being ineffective in controlling my platelet level. I then started Jakafi, which I took for 8-9 years until I converted to secondary ET myelofibrosis.

I remember that one side effect on some anagrelide users was related to the cardiovascular system. I initially had some occasional palpitations, but that settled down quickly, and honestly, may have been caused by my anxiety over the diagnosis at the time. If I remember correctly, my hem/onc ordered an EKG to make sure my heart was fine. The anagrelide effectively controlled my platelets until it didn’t. The Jakafi then effectively controlled my platelets.

I hope your husband finds something that works for him! Good luck!

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