Ruxolitinib and Fatigue: 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."

• zfa...
• Taken for 1 to 2 years
• June 20, 2017

Ruxolitinib for Myelofibrosis "I have post-essential thrombocythemia myelofibrosis. Jakafi has my platelet count and white cell count normal again. However, it caused my red cell count to go way too low, and so I am on Procrit shots to avoid transfusions. I am very fatigued after the slightest physical activity. I gained about 10 pounds and get pimples from it. Jakafi instantly got rid of my joint aches and pains."

• Kau...
• November 24, 2017

Ruxolitinib for Polycythemia Vera "I am 74 years old and have polycythemia vera (PV) since I was 62. Was on Hydrea and phlebotomy every 3 months. Was seriously very depressed and low energy. On Jakafi since May 2016, and no more phlebotomy. Now taking Jakafi 25 mg twice a day. My life is back and feels like not having PV. The medication is expensive at 25 mg because I need 20 + 5 mg. The cost is doubled because they don't make 25 mg pills."

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

Ruxolitinib 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."

• 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!"

• Joh...
• Taken for 6 months to 1 year
• March 10, 2023

For Myelofibrosis "I have been on ruxolitinib for about 9 months now. I started at 40 mg/day and am down to 15 mg/day now. My RBC has deteriorated significantly (even at a low dosage), which has led to some significant fatigue. I was on hydroxyurea for 10 years prior to this until I started to experience some uncomfortable side effects (quite painful neuropathy), night sweats, etc. I am quickly coming to the conclusion that this drug is not for me. With hemoglobin levels less than half of normal, it is hard to function properly. My doctor just started me (6 weeks) on Eprex to try and stimulate more red blood cells, but the results have not been positive so far. I am becoming somewhat despondent and not sure where to turn for an alternative course of treatment. Ruxolitinib is just not working."