Ruxolitinib and Swelling: What Users Say

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

Ruxolitinib 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

Ruxolitinib 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."

• Bea...
• Taken for 2 to 5 years
• September 13, 2021

For Myeloproliferative Disorders "Overall, Jakafi has done what it is supposed to do, and I've been very happy with my blood work. Side effects have included swelling that is not related to gout, cellulitis, clots, or any other condition. I have also lost eyelashes, hair has thinned to a lesser extent. It is easy to take, and the majority of side effects are minimal."