Jakafi and Migraine: What Users Say

• Sha...
• Taken for 1 to 6 months
• August 8, 2018

For Polycythemia Vera "I started on a higher dose, and my counts came down and itching stopped, but I had weight gain! Yuck! Migraines, loud constant ringing in ears, joint aches and swelling, dizziness. Then, I tried a lower dose, 5 mg 2 x day, and side effects lessened greatly, but my counts increased. I’m off of it and on Hydrea, and trying to lose the weight now (10 lbs). To add, the price of Jakafi, ruxolitinib, is RIDICULOUS."

• lee...
• Taken for 2 to 5 years
• June 28, 2024

For Myelofibrosis "Been on it for the past 5 years, starting with 5 mg 2x a day and now 25 mg 2x a day, which is throwing off my hemoglobin and lowering platelets. Enlarged spleen 23 cm lets me know when it's time to up the dosage. I have gained over 20 pounds, and a lot of it is swelling, looking pregnant, but I'm a dude. This past week I had to stop taking it for two days because my hemoglobin/platelet count dropped too low (I had to stop shaving and do no type of manual labor). The side effects were tough: severe migraines - had to black out my room, dizzy, faint, nausea, balance/coordination issues, brain fog, laying in bed for most of 48 hours. I had to go back on it because my spleen was exploding in size and hurting really bad. I need to get off of it and find a newer drug or clinical studies."

• aut...
• January 15, 2017

For Polycythemia Vera "I have been on Jakafi now for 7 months. I have had major weight gain (25 lbs) and migraine headaches every day. Before I started, my counts were over a million, and they are only down to 800,000. So for me, this isn't working. The side effects and losing days to headaches are not worth taking it."