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Has anyone had experience with Jakafi?
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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I've been on Jakafi since December 2022 and the only thing I experienced initially was an increase in cronic migraines. But they have since tapered off and I'm back to my normal 3 to 5 per month using Diamox that the neurologist from the Mayo Clinic has me using. I've recently gone through a 2-month period of shortness of breath. The pulmonologist has me using Albuterol inhaler once a day, in the mornings. My breathing is also taking a turn for the better and I don't get as "winded" whenever I exert myself. Other than that, I really haven't noticed any other annoying side effects. I couldn't tolerate the Hydroxyurea as it made me feel very ill and the Pegasys made me itch all over.
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2 ReactionsI have been on Jakafi for two years for a different condition: GVHD. I have responded very well to it. My only side effect has been a lower hemoglobin. It’s still within safe limits, but I had to do labs quite often in the beginning to monitor my numbers.
My insurance pays for it. I had to get an approval for it and my copay is $40 a month.
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3 ReactionsI’ve also failed other medications including Anagleride and Interferon (awful drugs!). Hydroxy made me violently ill. Jakifi is doing the job and has few if any side effects. The only thing that is of concern is the expense. The cost is $14,000 per year it’s a level 4 drug so the co pay is significant. Fortunately there are grants for people who qualify. It should be coming into the public domaine soon so that will provide some relief. I’m very grateful.
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2 ReactionsWelcome @papa6275, I'm tagging fellow members @draney @chattiek @pamdg @lwengel @raremiracle2 to share their experiences with Jakafi (ruxolitinib) for polycythemia vera (PV). Many members have talked about this treatment in the context of other discussions. To find them, you may wish to use Jakafi as a keyword in the Search.
Here are few related discussions that might interest you:
- What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV) https://connect.mayoclinic.org/discussion/polycemia-vera/
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I'm glad to hear that Jakafi is more tolerable for you than your experience with Hydrea. How are you feeling today?
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