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Anagrelide Or Hydroxyurea?

A myMPNteam Member asked a question 💭
Viet Nam

Hello everyone, Because my platelet count was too high (1.167) the Doctor prescribed me Anagrelide, 1 pill/day. The Doctor explained the reason why he did not prescribe Hydroxyurea to me due to the side effects of this drug.
Although, I understand that patients should trust their doctors, but I think all drugs have side effects. My current heart rate is 89 beats/minute, I think Anagrelide may not be suitable for me.
I would like to receive your experience. Sincerely thank you.

November 30, 2024
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Answer Summary

Members shared deeply personal experiences comparing Anagrelide and Hydroxyurea for managing high platelet counts, with one member recounting... Read more

Members shared deeply personal experiences comparing Anagrelide and Hydroxyurea for managing high platelet counts, with one member recounting a heart attack caused by Anagrelide and another experiencing balance issues, while others reported years of relatively stable management on Hydroxyurea despite side effects like nausea, bone pain, and mouth ulcers. Several members described their treatment journeys spanning decades, including transitions between medications like Pegasys, Bomedemstat, and interferon, with practical strategies emerging such as splitting Hydroxyurea doses between morning and evening, taking medications with meals and plenty of water, and working closely with MPN specialists rather than general hematologists to monitor blood work and adjust treatment plans. A recurring theme was the acknowledgment that all medications carry risks and side effects, but finding the right balance through careful monitoring, self-advocacy, and trusting one's own body can lead to years of meaningful quality of life despite living with a blood cancer.

A myMPNteam Member

I was taking Anegralide for 6 months- I had a heart attack purely because of the drug- I knew from the start it wasn’t right- I had all the bad signs on the instructions but at the time I only had a haematologist looking after me NOT an MPN specialist! I now have a superb MON specialist( this is so important)- he told me he never prescribes Anegralide as he is not comfortable with this drug.
I was on Hydroxyeurea for 24 years in variyi g strengths and a when it stopped working this is when I was out on Anegralide. I didn’t have many side effects in all of those years!
I am on Peg interferon now! Good luck!

November 30, 2024
A myMPNteam Member

I don’t know how much hydrea you are taking, but if it is multiple capsules daily try splitting them up between morning and evening. This worked for me. Also, have your water ready and get them down quickly. All the best.

December 25, 2024 (edited)
A myMPNteam Member

I have been on 500 mgm of hydrea daily for almost three years and have mouth sores frequently. I take it with a meal and drink a lot of water which helps.

December 26, 2024
A myMPNteam Member

Hi Patty2,
I understand how you feel about not wanting to try Anagrelide because of the heart side effects. It is true that no medication is perfect, and each medication has its own risks. I think you are right in saying that you will seek a second opinion from a specialist who will have more insight and help you find the best treatment for you. Your doctor will help you find ways to reduce the effects of Hydroxyurea or try other medications.
Sometimes seeing a doctor can open up new avenues that you were not aware of, and I hope you find the right balance. Good luck and stay strong..💗

December 1, 2024 (edited)
A myMPNteam Member

Hi JillLancaster,
Thank you so much for sharing your experience. I really appreciate the information you provide about using HU. Hearing that you have not had any side effects and that it has been helpful all along makes me feel more secure. I hope to find the right medication for me as you have shared. Thanks again

December 1, 2024

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