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harrishill 1

Posted , 7 users are following.

harrishill1
harrishill1

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

0 likes, 6 replies

6 Replies

  • margo82957
    margo82957 harrishill1

    Posted

    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!!!

  • harrishill1
    harrishill1

    Posted

    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

     

    • PO32_6AP
      PO32_6AP harrishill1

      Posted

      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 !!!
    • justin23294
      justin23294 PO32_6AP

      Posted

       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

    • alma87921
      alma87921 margo82957

      Posted

      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

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