Jakafi for Myelofibrosis User Reviews
Jakafi has an average rating of 6.6 out of 10 from a total of 7 reviews for the treatment of Myelofibrosis. 43% of reviewers reported a positive experience, while 14% reported a negative experience.
- Hopeful
- 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."
- T-Mac
- 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 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"
Frequently asked questions
- What are JAK inhibitors and how do they work?
- Which JAK inhibitors are approved in the U.S?
- What are the most common skin conditions? (with photos)
- 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."
- 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."
Are you taking this medicine?
- Slimp...
- 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."
- Micker
- 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."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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"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 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."