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Hello, I have PV JAK2+ Diagnodes 3 1/2 years ago at age 55. I’ve been on Hydroxyurea since day one. The doses have changed and now taking it daily. I have severe photosensitivity, nerve pain, especially teeth and I have neuropathy mostly in my hands and feet/legs. It is random and I just pay attention as I lose my balance easily and sometimes roll my toes from not picking up my feet enough while walking. Honestly I thought it to be the PV more than the meds? They tried to switch me to Jakafi but that sounds scary with side effects? Where you taking Hydroxyurea? I haven’t inquired about Besremi because they said this drug is the least damaging. Please keep us posted. Good luck!
Replies to "Hello, I have PV JAK2+ Diagnodes 3 1/2 years ago at age 55. I’ve been on..."
@nypara66 HU for me for 9 months. Complained about arm pain. Bleeding gums. Split tongue. Tingling in my legs and feet. Balance issues. early satiety. 15 lbs weight loss. All fell on deaf ears. The oncologist was all about my platelet numbers. (ET-jak2 and ASXL 1).
Self referred to an ET specialist at Cleveland Clinic. I felt heard ! No more HU. Trying to reduce inflammation right now and will be placed on another set of meds.
Don’t settle! Speak up. Get a second opinion from the specialist.
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@nypara66
Hi,
I have been on Besremi 500 mcg SQ Q2 weeks since 8/22 with good control of my Hct = @goal of <45%, requiring very few phlebotomies= <2/ year on average.
I was started on HU, but the side-effects were intolerable. as well as the lack of any evidence of long-term prevention of progression, which Besremi does have [increased evidence of remission to minimal residual disease both molecularly and hematologically.
I have not had any side-effects except for one episode of flu symptoms early on after a dose increase.