Has anyone had experience with Jakafi?

I've been on Jakafi since December 2022 and I've not had any bad side effects. Initially I had frequent headaches but they have been resolved. About 2 months ago I experienced extreme shortness of breath, but it is now getting better. May be related to fluid in the bottom of my right lung.

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets in control from Essential Thrombocythemia with JAK2 mutation. I've had no known side effects from Hydroxyurea and have lived, as though I didn't have ET. Unfortunately, my disease has transitioned into Myelofibrosis with a TP53 mutation and Splenomegaly (an enlarged spleen), a common result of Myelofibrosis. I've been taking Jakafi for 3 months, with the goal of reducing the size of my spleen, before a scheduled Bone Marrow Transplant (also known as a Stem Cell Transplant). I have had no known side effects from taking Jakafi, along with Hydroxyurea. What I have found from reading many blogs and doing research is that everyone is unique in their reaction to both medications and the type of blood disorder. My humble advice is to do your research from credible sources, ask your doctor many questions and get a second opinion, if you feel you need one. It can be a daunting task to live with our blood disorders, both physically and mentally. I know personally, my biggest challenge lies ahead. Best of luck to you. Carpe Diem!

Hi, you mentioned your husband was weaning off now regarding his taking Jakafi. Does it appear he'll no longer be needing this per his physician?

I get that and am on Hydroxyurea but this is something that PV patients experience sadly.

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

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

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)….

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

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

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.