Has anyone had experience with Jakafi?

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?

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.

I 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.

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.

Have been on Jakafi since Fall last year and the only side effect is continuous sensation of starting a UTI when I have to urinate (tied to PV) but it’s never that. Now examining if that might be connected to a food intolerance… Jakafi has been really good at stabilizing platelets and red blood count, and platelets still decreasing. Occasionally fatigue raises its ugly head, but otherwise A-okay.
Good luck going forward.

I’m doing ok however I am having burning and tingling on the bottom of my feet. Especially in bed at night.

I have the same UTI sensation but no infection. Strange.

Exactly - I’m glad to hear I’m not alone, but also wish it could be otherwise for you - it’s most disconcerting, sometimes even painful, but am told nothing can be done (Oncologist/haematologist) However, like I said, food intolerances are being examined in my case (GP)….

My husband also takes jakafi for his GVHD and is weaning off now but didn’t have any side effects fortunately.

Taking 10mg of jakafi twice a day for two weeks with no side effects. I switched from hydroxyurea after a year because I had no improvement of fatigue complaints. We’ll see. My opinion right now is that hematologists don’t know much about polycythemia and treat symptoms as best they can. JJD