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Anyone Taking Anagrelide Having Side Effects?

A myMPNteam Member asked a question 💭
Douglas, MA

I have ET and have been taking Hydroxyurea for 10 years. My platelet count is under control for the most part but recently (past 8 months) my Hemoglobin has been low and I get injections every 2 weeks to help with that but haven't had much success. My Dr. is recommending that I stop the Hydroxyurea and start Anagrelide. Curious about the side effects and tolerance.
Thank you.

August 26, 2023
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A myMPNteam Member

I am on Anagrelide. I experienced some side effects for about 2 weeks when I started taking it then it faded away. Now i am totally fine; nothing except some flu like symptoms every once in a while. Good luck

August 28, 2023
A myMPNteam Member

Hello again. More details on switching from HU to Anagrelide. Hope something in this long missive will be useful.
My transition from HU to Anagrelide began when I switched to hematologist/MPN specialist Dr. Noam Drazin (at Cedars Sinai) in December 2023. At that point, my previous hematologist (at UCLA) had me taking a 500 mg HU capsule daily plus a second capsule three days a week. He wanted to raise it to a second capsule four days a week, as my platelets were in the low 400's and he wanted them in the 300's. He was oblivious to the ugly diarrhea issues I experienced throughout 2023 as the days with two HU capsules were increased. He insisted that HU was the only medication for me, I think due to my age (72). He also didn't care that my platelets were in normal range used by most medical centers.
Dr. Drazin had an opposite view. He said there were better drugs for me, That matched what I've read on this website since I discovered it last autumn. He immediately put me on a DAILY 0.5 MG CAPSULE of Anagrelide (the lowest dose) and began gradually reducing HU. At first he continued one daily 500 mg HU while cutting back the days of a second capsule from three to two (instead of increasing it from three to four, as the previous doctor wanted to do). A month later, when CBC showed Anagrelide was working, he cut out all days of a second HU capsule. As of my last visit, February 22, my platelets were at 424, and HU was reduced to one capsule three times a week.
My digestive tract has not yet totally returned to normal yet. There have been some days of mudlike stool and sometimes a different problem, constipation. I expect this will all settle down as I leave the highly laxative HU behind, plus there are mild over-the-counter remedies that work.
An unexpected benefit: Headaches are much better, with change in meds.
People on this website have concerns about heart issues caused by Anagrelide. I specifically asked Dr. Drazin. He does not think there is a problem. I am carefully checking my blood pressure, just in case, as I have mild high blood pressure that is kept normal with medication.
I can talk about red blood cells if desired but this is already too long. Good luck!

March 3
A myMPNteam Member

Hi Ron, I have been struggling with side effects of Hydroxyurea since June 2022. My hematologist just stopped it for a month because headaches were getting worse, My platelets are currently 523 and after this month I am going to start Anagrelide at the lowest dose, I am waiting for pills to arrive but I think the lowest dose is .5 mg twice daily. I hope you are having success with Anagrelide.
Eileen

March 2
A myMPNteam Member

I have been taking Hydroxyurea for 3.5 years for ET from CalR mutation. I recently switched hematologists because I had major digestive issues when HU was increased throughout 2023, and my former hematologist wouldn't prescribe anything except HU. The new one I first saw in December has me trying a little less HU plus Anagrelide. For me, Anagrelide is much better than HU in terms of side effects, plus I found out today that my platelet level has gone down.

January 19 (edited)
A myMPNteam Member

I tried anagrelide but had such severe headaches it was difficult to lift my head off the pillow. I am sensitive to medications anyway.

September 27, 2023

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