Jakafi for Myelofibrosis User Reviews

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

"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."

• Hop...
• Taken for 1 to 2 years
• October 15, 2023

"I first tried Jakafi for 3 months, and my stomach rebelled. After 6 months of stopping it, I started again at the minimum dosage (5mg) once a day. I am now at twice daily, and no further issues except that I have had 7 lesions on arms and legs that look like a bull's eye, enlarge to a quarter size, scab over with a thick, shiny yellow waxy coating that turns light brown before it starts to crumble. It takes about a year to return to normal. My numbers are much better with Jakafi, so I tolerate the lesions."

• lee...
• Taken for 2 to 5 years
• June 28, 2024

"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."

• T-M...
• Taken for 6 months to 1 year
• March 6, 2021

"I am on Jakafi, and all was going well until my doc decided to prescribe 5 mg tablets. Well, the price jumped exponentially to well over double for the same 15 days and the same mg dose. This he thought was needed for small adjustments. I was shocked to see my benefits eaten up almost instantly for one month of medication. I am furious, and this medicine does not offer that kind of money relief. I am looking into transplant and warning others... NEVER GET THE 5 mg tablets!! Over 34,000 for one month prescription. No wonder my insurance is over 1,000 per month just for me... SMH."

• EdD...
• Taken for 1 to 6 months
• January 23, 2024

"My appetite has returned and I eat much more like I used to. This has helped me gain weight. I have regained a bit of my energy. I also have side-effects: reflux, gas, some diarrhea, small red spots on my skin, lots of bruising."

• Sli...
• Taken for 1 to 2 years
• March 19, 2021

"Been on Jakafi for over a year. Twice a day varied from 5 to 20 mg. Frankly, it has done little or none for me."

• Mic...
• Taken for 1 to 6 months
• August 12, 2023

"No side effects, on 5 mg, twice a day, raised my hemoglobin levels, decreased my tiredness."