Ruxolitinib and Joint Pain: What Users Say

• ann...
• Taken for 6 months to 1 year
• November 9, 2021

Ruxolitinib for Polycythemia Vera "I have been on Jakafi for 10 months for Polycythemia Vera. It has reduced my itching, bone and joint pain, fatigue, and my counts are actually normal for the first time in decades! I have gained about 5 lbs on it, but no other significant side effects. I am taking a very low amount (5 mg 2x day), and maybe that's why I haven't gained a lot of weight. This medication has literally given me my life back."

• 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."

• Ann...
• Taken for 1 to 2 years
• January 28, 2022

Ruxolitinib for Polycythemia Vera "I am 57 yrs. I have had PV for well over 20 years. I have had phlebotomies and then Hydrea and now have been on Jakafi for a year and a half. My overall experience with Jakafi is that it gave me my energy and life back. My joint pain disappeared immediately, and my energy level was amazing! I was on 5 mg 1x a day to start and then went up to 5 mg 2x a day, which I am on now. I have gained about 10 lbs, even on this low dose. Then about 6 months ago, I got shingles, I believe, from the Shingrix vaccine I had just gotten, and since then, I have not felt well. I get sick a lot, and in the past 6 months, my joint and bone pain is so much worse, almost like pre-Jakafi. The meds are working well for all blood counts right now, so I am on the fence about stopping the med."

• Phi...
• June 26, 2021

For Myelofibrosis "My mother has polycythemia for 13 years, then the condition changed to primary thrombocythemia and mild myelofibrosis. BM biopsy was done. She was on hydroxyurea for the last 13 years. Then her doctor changed it to Jakafi when the myelofibrosis occurred. She took it for 7 months at a dose of 15 mg daily. The cost was 36,545 pounds per month! In our country, Jakavi is not included in insurance. We thought it would be effective, but unfortunately, it made her feel worse. She was so fatigued with more muscle and joint pain, sleep disturbance, hemoglobin level fell from 11 gm to 6 gm in 4 months-almost a 2 gm decrease every 1.5 months. She received blood transfusions of packed RBCs every 2 months, and still, her platelets level was reaching 700-800. So she continued hydroxyurea again as 2 or 3 capsules with the Jakavi. Finally, the doctor asked to stop the Jakavi again and continue on hydroxyurea!"