1. < Blood Cancers & Disorders

Has anyone had experience with Jakafi?

Posted by papa6275 @papa6275, Aug 5, 2023

I was diagnosed with polycythemia November 23, although it is likely I had it for a significant period prior. I tolerated the hydrea well for three months, then became quite ill as a reaction to the hydrea. After trying to "restart" several times, the same reaction occurred. My oncologist then started me on Jakafi about 10 days ago and, so far, no side effects as I am tolerating the medication well. If all goes well, this is a medication that makes you feel as if you are cured as it controls HCT, WBC, platelets, and iron levels, without phlebotomy. Please advise if you have been on Jakafi and what your experience has been.

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jackiecarey | @jackiecarey | Jun 19 8:05am

I read a woman was on Jakafi for 20 years and proud to say she was 92...that post has stayed with me since I read it a year ago..

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pamdg | @pamdg | Jun 19 10:24am
In reply to @albertedward "Has anyone one been on Jakifi for more then 3 years." + (show)
@albertedward

Has anyone one been on Jakifi for more then 3 years.

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Four years for me. I take 5 mg twice a day. It definitely helps with my PV side effects.

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1 reply
albertedward | @albertedward | Jun 19 12:35pm

Glad to hear I am only been on it for 5 months.was told it is 18,600 for 20 pills.Alot of money if it does not work.So far so good Thanks for your reply.

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2 replies
nypara66 | @nypara66 | Jun 20 6:14am
In reply to @pamdg "Four years for me. I take 5 mg twice a day. It definitely helps with my..." + (show)
@pamdg

Four years for me. I take 5 mg twice a day. It definitely helps with my PV side effects.

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What side effects are you having with PV? Lately I’m having stinging and burning on the top of my hands and my feet up to my knees. I am on hydroxyurea and it’s super cheap and keeping my platelets under control. I heard your med is very expensive? I don’t have prescription coverage 😒

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eileen11108 | @eileen11108 | Jun 21 7:00am
In reply to @albertedward "Glad to hear I am only been on it for 5 months.was told it is 18,600..." + (show)
@albertedward

Glad to hear I am only been on it for 5 months.was told it is 18,600 for 20 pills.Alot of money if it does not work.So far so good Thanks for your reply.

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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,

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1 reply
albertedward | @albertedward | Jun 21 9:35am
In reply to @eileen11108 "I was shocked at the price. I researched it and also came up with a price..." + (show)
@eileen11108

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,

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I have to collect alot of pop bottles.

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drmshadowrider | @drmshadowrider | Jun 21 5:57pm

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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1 reply
jeffmacl | @jeffmacl | Jun 22 6:19am

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.

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1 reply
albertedward | @albertedward | Jun 22 8:50am
In reply to @albertedward "Glad to hear I am only been on it for 5 months.was told it is 18,600..." + (show)
@albertedward

Glad to hear I am only been on it for 5 months.was told it is 18,600 for 20 pills.Alot of money if it does not work.So far so good Thanks for your reply.

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On north west bay rd in front of the little nursery

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 22 9:21am
In reply to @drmshadowrider "My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My..." + (show)
@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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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?

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