harrishill 1

nh_user_11447 · September 16, 2018, 3:28am

Hi margo. thanks for your reply. It is good to know that 5 ml twice a dy works well. I wouldn't want to take too much especially when I first get on it. Now, I just have to talk to ,my hematologist this week, and hope he agrees with me. harrishill

nh_user_1172871 · September 16, 2018, 6:32pm

HI

I started at 10mg twice a day,but could not tolerate. The cost of Jakafi is impossible to afford but your Dr. can get you a grant. Lots of paper work ,but worth your life!!!

nh_user_11447 · September 17, 2018, 12:46am

Hi margo. if you had to get a grant to go on Jakafi, where do you live? I live in the US, and Medicre pays for my meds and I have a co-pay which so far, isn;t very much.I pay only about five dollars for my Hydroxy per prescription.harrishill

nh_user_35301 · September 17, 2018, 8:15am

I asked my consultant if there was another medication I could go on ... she said you don’t want to go on anything else ( indicating it’s not good) hydrox is the one for you ! So there you are, I’m in the Uk so all free thankfully .best of luck I’m on 16 a week and am fine and can do anything I want lucky me !!!

nh_user_1004054 · September 17, 2018, 3:04pm

Hi po326ap. I live in the US. I've been on Hydroxyurea as you 16 per week for the last 3 years. My platelets are now under control 340. No side effects. Except for the loss of food taste in the last 2 years. My doctors tell me it's not from the med. I'm not so sure. I asked my hemothalogist if I could try Anagrelide. He does not recommend it ,but reluctantly gave me a prescription to try for a few months. But wants me to get a blood test every 2 weeks. I've not started to taking the new med. Anagrelide and don't know if I will. He caution me about the possibility of heart failure. Other than the cost prohibited of Jackafi In the US ,Hydroxyurea is the only Drug. It's been hell in the last 2 years. All kind of tests and no one knows what's causing the loss of taste. My age I guess .82 but feeling physically fine.

Justin

nh_user_1172871 · September 17, 2018, 4:04pm

NY

nh_user_1157698 · September 19, 2018, 10:45am

Hi Margo when were you diagnosed with prv? Have you had venesections and we're you put on jakavi straight away after diagnosis ? Do you have any side effects ? I've taken hydroxy for 15 years and am experiencing the leaden legs and cramps described by Harris Hill 1. However living in southern Ireland I pay for all Meds. Hydroxy costs 12 euro a month . Jakafi costs hundreds .

Thank you.

Alma