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PV Drug Therapy?
A myMPNteam Member asked a question 💭

I was diagnosed with PV 9 months ago and am trying to get up to speed. Just discovered myMPNteam. I’m curious for those that have been dealing with this for longer, at what point is drug therapy recommended? My doctor said it was preferable to do phlebotymys to keep HCT below 45, 40 even better. But as I read some of the stories here I see many people on drug therapy. Appreciate any wisdom

posted June 25, 2023
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A myMPNteam Member

Hi Roger,

I was diagnosed after 60 so they started with Phlebotomies, baby aspirin and Hydroxyurea. I also have a few mutations that may mean more progression so that might be why my doctors suggested Hydrea right away. I initially had some side effects but do not have any now. The one thing about phlebotomies (besides the inconvenience) is that I sometimes become anemic. Other than that they can work very well.
If I have learned anything it is that each journey is different. I am not sure whether that is because the disease is truly different for each person or doctors just have different opinions or different experience level with the disease. Since all the MPNs are rare, it is important to get a second opinion from an MPN specialist. Sometimes you can even get that through telehealth and the specialist can work with your local hematologist.
Good luck.
Laurie

posted July 3, 2023
A myMPNteam Member

Thank you Rozine. I’m learning so much. interesting that I was told phlebotomy’s are what you want, not drugs, yet there seem to be several people on this group who think (or have been told by their docs) the opposite.

posted June 27, 2023
A myMPNteam Member

I was on Hydroxyurea and was having a lot of Phlebotomies. When switched to Jakafi I no long needed the Phlebotomies, but my blood counts tanked. I became Anemic and was on the verge of transfusion. My issues is Now MF and I am on Ojjaara and things are going along pretty well.

posted April 10
A myMPNteam Member

I did phlebotomy for 18 months on jakafi now and my life has never been better , could not tolerate hydroxy ! Judy 5

posted March 19
A myMPNteam Member

Tampa Florida

posted July 25, 2023

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