I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues. However platelets at last phlebotomy were 1093 and have been that high for a while. RBC and WBC both high. The manufacturer of Jakafi offers a 30 day trial for those of us who are over income for patient assistance. I, like many others, have traditional Part D drug plan with a $480 deductible and then a crazy formula of escalating costs. This drug will be very expensive for me. I would like to hear from others who are taking Jakafi. Have you had any side effects? I appreciate any feedback you have for me.
Roberta
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Bluetoday1
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I also have PV and am HU-intolerant. I have done much better on the interferons - Pegasys and Besremi. I have accessed them on my Medicare Part D plan. On my plan, the copay is $100/month for either option. It would be the same for Jakafi. I also have a $2000 annual cap. I always reach that before the end of the year. After that, all approved meds are covered 100%.
At the level of thrombosis you are experiencing, increased hemorrhage (bleeding/bruising) does occur. Plavix is also known to have this side effect.
It certainly makes sense to explore you other options. hope you can sort out the finances. Perhaps you can check into the Incyte patient assistance program.
I've been on Jakafi about five years. The worst side effect is anemia, for which I've taken iron from time to time. I was on private insurance, with $20 copays. I still have a hoard of pills but I'm soon going to have to order the via Medicare, which will be in the thousands, at least the first time, if I haven't spent $4,000 already in pharmacy costs.
I'm on Jakafi for MF and like other comments there can be a dip in blood counts for a short while. For many the best "side effect" is reducing the side effects of the disease like itching
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