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Discussion
MGUS with Polycythemia Vera (PV)
Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my...
Last active: May 6, 2023
Discussion
Will my Hydroxyurea dose ever be reduced? Does this happen with ET?
I was diagnosed in March 2025 with JAK2, TET2 and ASXL1 mutations after a bone marrow biopsy. I have had very high platelets but Hydroxyurea...
Last active: Jul 17, 2025
Discussion
New - possible Polycythemia vera (PV)
Hi my hematocrit has been high for a few years, and cardiologist suggested it see a hematologist. My pulmonologist did a sleep study and found...
Last active: Mar 25, 2024
Discussion
Polycythemia Vera and low iron
I was diagnosed with POLYCYTHEMIA VERA in 2017 at age 57 and shortly thereafter with RA (I am on Rinvoq for RA). I was and...
Last active: Mar 6 4:03pm
Discussion
ET management, Is anyone here taking Jakafi or Pegasus?
Hello Everyone, I am 69 yo and I have had ET for 21 years. I am triple negative (NO JAK2, CALR, MPL ). I have...
Last active: Feb 25, 2025
Discussion
Developed Rash on Hydroxyurea (HU)
I am 72 years old and have ET with JAK2 mutation. I am on HU 500 mg twice a day. I have recently developed a...
Last active: Oct 17, 2025
Discussion
fevers from ET or HU
I have had ET JAK2 pos x 2 yr plts around 500 taking 2 baby asa daily. My Plts jumped to 702 and I was...
Last active: Dec 22, 2024
Discussion
Does Hydroxyurea affect kidney function?
I am 79 with a one year diagnosis of ET JAK2. My platelets were slowly rising for several years before diagnosis and my kidney function...
Last active: May 26, 2023
Discussion
Anyone experienced Bone Marrow Transplant with TP53 mutation?
After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for...
Last active: Aug 7, 2025
Discussion
Anyone taking Hydroxyurea for ET and Prolia for Osteoporosis?
I take 500 mg of Hydroxyurea 4 times a week for Jak2 ET and I also have severe Osteoporosis. My Oncologist is recommending "Prolia" injections...
Last active: Nov 1, 2025