Jakafi and Dizziness: 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."

• MAB...
• Taken for 1 to 2 years
• March 22, 2023

For Polycythemia Vera "I've been enjoying not feeling awful all the time. With Jakafi, I have had no problems with skin blisters when I am in sunlight, as I did with the previous medication. It is hard to say which med gives me vertigo issues the most. I suppose the dizziness is mild with Jakafi. In general, I have more energy and less stress over shortness of breath - until recently, again. I don't know if the current fatigue I have suddenly again is due to the medication dose or if I am experiencing another drug side effect or my body is simply old and wearing out. I know that Jakafi has given me my life back again. But currently, my body is not in balance - I'm not sure why: chest pain, increased heart rate, higher BP, shortness of breath, fluid retention, weight gain, fluid gain, headache, and low kidney function. My cholesterol went up - and I'm not sure why. I am currently being worked up again for a cardiac issue. For a year, however, I felt so much better than I did without Jakafi."