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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

milkweed | @milkweed | Aug 6, 2023

I’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.

Colleen Young, Connect Director | @colleenyoung | Aug 6, 2023

Welcome @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?

View More View Less

Please sign in or register to post a reply.