Ruxolitinib for Myelofibrosis User Reviews

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

Ruxolitinib "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

Ruxolitinib "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

Ruxolitinib "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

Ruxolitinib "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

Ruxolitinib "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."

• Phi...
• June 26, 2021

"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!"

• Zep...
• Taken for 2 to 5 years
• December 6, 2020

"I have been on combined Ruxi/Hydroxi for two years now. Apart from the usual weight gain and a mild skin rash, I feel fine. No other adverse reactions. I was blood transfusion-dependent (every month). Haven't had a transfusion for the last 6 months. My RBC stays above 115. Amazing, really."

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

"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."

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

Ruxolitinib "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

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