Has anyone had experience with Jakafi?

good to hear

After taking Hydrox. (500mg) for 2.5 years for PV, my PLT levels weren't coming down enough so my new Hematologist prescribed Jakafi instead. My PLTs shot way up so back to only Hydrox. but up to 1000mg a day. No bad side effects with either. Some drugs work for some, others not so much.

Oh thank you for your information, i’m hoping i don’t get much of a reaction either. Hope your transplant is successful, i know that is difficult. Best of luck.

Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic leukemia. It worked great and I had no side effects or problems with my blood counts. The only reason I came off and did the transplant is because it tends to only work for a year or so for CEL and my doctors recommended doing the transplant sooner than later. Good luck.

I have been on Jakafi for several years now. My hemoglobin dropped when I started the drug, but it wasn’t dangerously low. I stayed on it and my bloodwork stabilized over time. Jakafi does a great job controlling my GVHD. My doctor is now slowly decreasing the amount I take.

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg of Hydroxyurea extra per week . I take 1000mg/day. Then everything fell to dangerously low counts . I went off the HU and waited 2 months for WBC to come up to the high end of normal. A new Dr has started me on Jakafi. 20mg twice a day for a month, then check blood levels. Has anyone taken Jakafi? How did it go?

I moved to Jakafi 2 years ago after becoming intolerant to hydroxyurea after about 5 years (for treating ET). Have no real issues. My platelets are still higher than normal, but it holds them mostly steady. It has not stemmed the progression of the symptoms, but mostly living well with the "new norm" OK.

10 mg twice a day. Thx, I’ll ask around. Itching was a real problem and it took care of that

Hi @jerrlin. While you’re waiting for others on Jakafi to respond, I read through the information for Jakafi and it looks as though weight gain can be a common side effect of the medication.

I also did a quick search by typing Weight gain with Jakafi in the top search bar and had several replies pop up regarding weight gain. You might want to read through some of the comments and tag the members if you’d like.

But the good news, it’s working for you and with no side effects! That’s excellent. What is your daily dosage?

I’m on my second month of Jakafi. I’ve had no side effects and so far my blood counts are good. I have Polycythemia Vera with Jak 2. I have noticed some weight gain. Has anyone else noticed that?