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DiscussionJak 2 Positive with Elevated Platelets: What symptoms do you have?
Blood Cancers & Disorders | Last Active: May 10, 2023 | Replies (35)Comment receiving replies
Replies to "I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually..."
Welcome ortho3,
Have you had a bone marrow biopsy? Are you diagnosed with ET or PV?
I my opinion 1,000 mg daily is a pretty heavy starting dose of Hydroxyurea (HU). Can you ask your doctor about possibly going down to starting dose of 500 mg?
My side effect at 500 mg daily have been headaches.
Eileen
yes, the first year I was more tired than usual, but it was also the first year of the pandemic, which also took it's toll on me. I had some other side effects (gut), but not too bad. This is my 3rd year on 1,000 HU. I get a blood test every 6-12 weeks depending on most recent results and side effects are minimal now
I take 500mg of hydrea and yes i'm always tired but my doctor blamed in on my age...No one ever listens to the patient.....
Have you been able to start on a lower dose of Hydroxyurea? 500 mg seems to be more of a standard starting dose, and then move up in strength if needed.
What is your diagnosis? I was diagnosed in January With PV I started out with my platelets at 777 and was given 500mg of HU daily. Usually that is what most people I have seen on here start with. I would call and ask. I haven’t been fatigued from the meds but it takes time to adjust. I am getting brown spots on my skin and my gums were very tender but that has gone away after two months. They say the meds brings out old sun damage and it’s just cosmetic but I’m not happy about the spots. I guess if I keep living that’s minimal lol Good luck!
I too take Hydrea 500mg. I know it makes me tired . fortunately i'm retired so I can sleep late. I did tell my doctor he said i was tired due to my age. Im not accepting that answer why wasn't I tired before I took the Hydrea.
Re Hydroxyurea. I have been on 500mg and 1,000mg per day for almost 1 year. Fatigue and ongoing headaches seem to be constant but I think this drug (in my opinion) is better than an alternatives offered so far