Have Any Of You ET'ers Ever Stopped Hydrea (under Drs Supervision) Just To See What Would Happen? What Did?
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.
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???
Another 5-6 weeks without Hydrea and my platelets are 411 :)
Jak2 v617f
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
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
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