Jakafi and Weight Gain: What Users Say

• Che...
• Taken for 1 to 2 years
• September 18, 2019

For Polycythemia Vera "A lot of people have experienced weight gain on Jakafi, and I have too. For me, I only lost weight on this medication by eating low carb with some form of moderate exercise when able. I also found I slept better and generally felt better on a low carb diet while taking Jakafi. Hope this helps someone else struggling with weight gain after starting this."

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

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

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."

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

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."

• 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."

• 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."

• Lau...
• Taken for 5 to 10 years
• February 22, 2022

For Polycythemia Vera "Gained weight, especially in the waist. And dieting does not help."

• TBs...
• Taken for 6 months to 1 year
• March 23, 2023

For Graft Versus Host Disease "I’ve been on Jakafi for 7 months to get rid of my GVHD rash, which helped. My dose was 5 mg twice a day. Gained 30 lbs of weight and fluid. Getting weaned off now. Hoping I can lose the lbs."