Has anyone had experience with Jakafi?

Yes, I've perused many of the posts. It's truly inspirational to read success stories related to Jakafi. HOWever, the elephant in the room is the ridiculously high cost of the drug. Incyte, the inventor and manufacturer of the drug, is gouging consumers. Not sure what their corporate mission statement is but profiting from patients who find themselves in life-or-death situations, seems indefensible. The term "big pharma" has become ingrained in our culture and frankly leaves a bad taste in my mouth. Just like its counterparts: Big Oil, Big Ag, and Big Tech, Big Pharma holds a monopoly on society and exploits the most vulnerable among us with unchecked economic power and political influence. While I am a capitalist and believe exceptionalism should be rewarded, there are times when profit has replaced consciousness. I've written congressmen/women and encouraged others to do the same. Peace out.

Hi @mrsspiker. Let me officially welcome you to Connect, though you’ve been a member for a couple of years but have never replied before. I’m happy to see you’ve joined in the conversation. How long ago did you have your stem cell transplant and did you need the Jakafi afterwards?

We have quite a few members in the forum that have had bone marrow transplants for a variety of medical reasons. Would you like to share your story with us? The perfect place for that would be in this link!

~My bone marrow translant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

I’d love to know more about your transplant. Was this using your own cells or that of a donor? Would you mind sharing what illness had you needing the transplant?

I’m reading this thread looking for side effects, so far, it looks like there are none? I was prescribed the medication after my stem cell transplant, in case I needed it. They wanted to make sure it was approved before having me start, if needed. I have Kaiser (not sure if it mattered, but it was their highest plan coverage available), and it was approved right away, and because my annual deductible and copayments were met (due to transplant costs), it was at no cost to me. My Drs were shocked that I had it in hand the next week and at no cost.

I had no idea of what that really meant, until reading this thread. Now feeling very blessed and thankful. Also, reading that someone lived to be in their 90’s on it for 20 years, eases my concerns.

Hi @jeffmacl and welcome to Connect. You’ve had quite a time with your ET and MF. What has the recovery from the splenectomy been like for you? I can imagine with your Hgb hovering around 8, that has to leave you feeling pretty sluggish and tired all the time. Does your hematologist feel the red cell production might increase over time or is this stable now at 8.0?

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?

On north west bay rd in front of the little nursery

I have been taking Jakafi for post essential thrombocytosis (PET) Myelofibrosis since Nov 2020 and had a splenectomy in Apr 2024 and still taking Jakafi. I was taking hydroxyurea from Mar 2015 until Oct 2020. The medication helped stabilize platelet and white blood cell counts and decreased my blast count to 1% to 2%. Jakafi will most likely reduce your hemoglobin levels (HGB). My new normal for HGB is 8.0.

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

I have to collect alot of pop bottles.

I was shocked at the price. I researched it and also came up with a price of $18,068 for 60 pills. If insurance did not pay for it you would need to be very rich,