Janice, my hematologist just took me off HU for a month because of increasing headaches. My platelet count right now is 523. After a month, I am going to try Anagrelide at the lowest starting dose, Next option is Pegasys.
Thanks, Eileen

HI Eileen. Dr. Noam Drazin, the hematologist/MPN specialist I switched to last December, is happy with platelets in the 400's. He totally disagrees with my previous specialist, who wanted to add more HU to bring platelets into the 300's. The normal ranges for ET differ at different medical facilities, which is confusing. For me, Anagrelide is making me feel so much better than HU did that I feel like kicking my heels in the air. There is so much conflicting information! Dr. Drazin told me last week, when I specifically asked him, that there is no heart risk from Anagrelide. Bottom line: Can you get a second opinion from another hematologist, preferably an MPN specialist? My insurance paid for that.

Hi Janice, I have been taking 500 mg HU on and off since June 2022 for ET JAK2. My platelets started out at a one time high of 735. They have mostly been around 550 since starting taking medication. I had dizziness at first, then diarrhea, then headaches. Hematologist has let me cease HU for a month or so at time. When I return I have been right around the 550 mark. I take Eliquis for AFib which is why I am a little hesitant about possible palpitations with Anagrelide.. I will be 80 in April and currently take 500 mg 4x a week and headaches are becoming problematic and also fatigue…might have something to do with being 80.

A man where we live has been taking Anagrelide for over 20 years and now is in early stages of fibrosis, I believe he is in his 70s and they are continuing to keep him on Anagrelide at a lower dose. Also, I think I read long time use of HU can lead to leukemia. Pegasys has its own issues.

My hematologist really wants me to get platelets below 400. I never want to go on high doses of HU. So I am considering Anagrelide or Pegasys.

Best wishes, Eileen

Hi Eileen. I have been taking Anagrelide since mid-December of 2023. So far, it's working well to lower platelets, without the side effects I was having with Hydroxyurea (HU). More details:
I've been under treatment for Cal-R mutation ET since the summer of 2020. Until last December, I had a hematologist who insisted that Hydroxyurea (HU) was the only med to use. It worked to lower my platelets but screwed up my digestive system throughout 2023 while the dosage was gradually increased. I was told I had to increase the dose or risk a blood clot. Very upsetting. I switched in mid-December to a hematologist who is an MPN specialist. His name is Dr. Noam Drazin. He immediately started me on Anagrelide and has had me cut back gradually on HU. This is working great, and I'll soon be off HU altogether.
Reactions to meds vary greatly. For me, Anagrelide is SO MUCH BETTER than HU! There have been comments on this website about possible heart issues with Anagrelide, but Dr. Drazin specifically said that is not a problem. I He told me Anagrelide might cause a problem with "bone marrow fibrosis" 20 years from now, but not for a long time. Makes me think it might not be appropriate for younger people. For me, at age 72, it is just fine.
Good luck!