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Has anyone had adverse affects from JakaFi for PV
I am 74 years old, female. Three years ago diagnosed with PV After five phlebotomies I was told my platelets were too high to continue. Hematologist offered hydroxy…..I read about it and determined to self manage for as long as I oils keep numbers down.
I have fatigue and tiredness so have begun nappping on a daily basis. Makes me feel much better. Occasional headaches for which I take aspirin. I am now being pursued to take JakaFi for the high red and white cells. Again, upon exploring the side effects, I’m a bit hesitant in trying it. HAS ANYONE WITH PV TAKEN JAKAFI? Any side effects, comments to share. Thank you.
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I have been on Jakafi for 3 years for GVHD (I had AML and a stem cell transplant). I have tolerated the medication very well. In the beginning my red blood cell count dropped quite a bit, so I had to be monitored and had regular blood draws. That has stabilized and I see a lot of good progress in controlling my GVHD. I understand that each person reacts differently to Jakafi. I know that some patients have to stop Jakafi because their blood cell count dropped too much. I definitely recommend to give it a try and see if it works for you.
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3 ReactionsThank you for your comments. My RBC, WBC, and platelets are at the top of the range, so my understanding it will take a few months to get them down to an acceptable range. I have digestive issues that may be related to the enlarged spleen….I was informed that .the medication should help that also. I will have one additional CBC to confirm the blood levels and then determine weather to pursue the JakaFi.
I appreciate any comments. They are helpful and calm my heart!
M
I have been taking 5ml Jakafi twice a day for three years. It has been a life changer for PV side effects such as fatigue and optical migraines.
Thank you for the info on side effects. Did you have either prior to taking the med? I have fatigue and occasional ocular migraines.
10 mg twice a day suggested for me. Good to know I could get 5mg.
Thsnk you again! I’m beginning to feel better about taking it! God bless you all!!