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Have Any Of You ET'ers Ever Stopped Hydrea (under Drs Supervision) Just To See What Would Happen? What Did?

A myMPNteam Member asked a question 💭
King George, VA and Boothbay Harbor, ME

I saw a MPN specialist who suggested that I try this. I'd be curious to see if others have done it and what the outcome was.

April 3, 2021
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Answer Summary

Members shared widely varied experiences with stopping Hydroxyurea under medical supervision, with outcomes ranging from platelets remaining... Read more

Members shared widely varied experiences with stopping Hydroxyurea under medical supervision, with outcomes ranging from platelets remaining stable in the low-to-mid range for months or even years, to counts rapidly climbing back into the 600,000s or even exceeding 1 million within weeks. Several members described switching to alternative treatments like Pegasys or Jakafi after Hydroxyurea caused severe side effects including anemia, gastrointestinal distress, dangerously low blood counts requiring transfusions, or painful skin reactions. A recurring theme was the highly individual nature of ET management, with members emphasizing the importance of close monitoring through frequent blood work, open communication with hematologists about symptoms and concerns, and recognizing that what works for one person may not work for another.

A myMPNteam Member

Interesting, I originally started Hydrea 26 years ago when my platelet counts were just over 1 million and my spleen was enlarged. My counts went down to the mid 300's on the same dose for 23 years. I stopped Hydrea almost 3 years ago and after being off of it they've stayed in the low 400's. It seems strange that they wouldn't pop back up. It makes me wonder if Hydrea can put you in remission after taking it for two decades???

April 5, 2021
A myMPNteam Member

Another 5-6 weeks without Hydrea and my platelets are 411 :)

December 15, 2022
A myMPNteam Member

Jak2 v617f

October 30, 2022
A myMPNteam Member

No I had to stop Hydrea after 1 year bc my legs and feet started to swell with a rash. So my medication was changed to Zakafi 20 mg 2x a day for 3 years

October 28, 2022
A myMPNteam Member

UPDATE:
I now am taking only five hydrea a week because my numbers were dropping too quickly and I told my oncologist that I did not want my hgb to get low enough to require a blood transfusion. My hgb went from 11.1 to 8.4 in three months taking the hydrea 7 days a week!! It only dropped to 8.0 when taking hydrea 6 days a week! Now I go for labs tomorrow and that will be two weeks of taking the hydrea for 5 days a week. Doctor says she is curious what my white count will be at.
Wish me luck!
Tracy

June 13, 2022

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