Has anyone had experience with Jakafi?

I was on Jakafi for GVHD and I had no side effects I can remember, and it worked.

Best of luck to you, as well, @tampakaren. We have all been dealt a unique set of circumstances and recommended treatments are across the board. I hope your new clinical trial works out for you. Keep the faith! Carpe Diem!

Hi Steve
My case is similar to yours. I was treated with Hydroxyurea for7 yrs for ET JAK2. May is 2022 diagnosed with myelofibrosis JAK2 I have been on Jakafi, Hydroxyurea and completed six cycles of Vidaza chemo injections. Unfortunately my White Cells just keep rising. So up and down with meds. I just entered a clinical trial using Fedratinib and Hydroxyurea. It will most likely take a couple months to see if there are any positive results. Best of luck to you with the stem cell transplant.

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)….