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Has anyone had experience with Jakafi?

Blood Cancers & Disorders | Last Active: 6 days ago | Replies (54)

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@drmshadowrider

My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My hematologist/oncologist prescribed Jakifi about 6 months ago. I have CBC lab draws every three months to track results ... so far the drug is helping. I continue to experience bruising and occasional bleeding from bruises but it's manageable. Before Jakifi, I was experiencing dizziness, headaches, low energy, weight loss and critical high platelet counts. While the drug is working, as mentioned by others, it's very expensive. I'm on Medicare and have a part D stand-alone Rx plan, but I'm still on the hook for $3,000 monthly co-pays. I've been successful in obtaining financial assistance through the PAN Foundation. With the passage of the Inflation Reduction Act of 2022, caps for out-of-pocket costs were put in place for Medicare patients with a Part D plan. For 2024 the cap is $8,000 which I've already reached. In 2025, the cap is $2,000 for name-brand (not generic) drugs. A generic for Jakafi will not be available until the patent expires in December 2028 ... do your own research. Good luck to all and God bless

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Replies to "My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My..."

Welcome to Connect, @drmshadowrid. It sounds like you’re having good success with Jakafi but that is a hefty monthly price tag. You’ve certainly done your homework in finding some financial relief to lower your out of pocket expenses. Thank you for sharing with others what has worked for you!
That’s what this forum is all about…helping others. I hope you become a regular contributor.

If you’d like to meet other members who also have myelofibrosis this discussion link posted below will be a great place to start. More can be found by typing myelofibrosis in the top search bar.
Here’s the link to just one of many discussions on MF where you can meet, @samlupowitz @jeffrad1 @mga @snakebite and others.
~ Myelofibrosis https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/?commentsorder=newest&pg=3#chv4-comment-stream-headeror.

Thank you again for sharing what has worked for you with your MF. Have you checked out any other discussions?