Oh yes Alex i do take 5 mg Jakafi twice every 24 hours. Not really experiencing any serious side effects. Yes, i also like you have Myelofibrosis. Interesting to read that Kathyrn is now replacing Jakafi for Ojjaara. I don't think we can get that in New Zealand.

I also have hair loss with Jakafi.

I switched from Jakafi to Ojjaara and it has improved my life so much. My side effects with Jakafi-shortness of breathe, night sweets, headaches, weight gain, enlarged spleen ,anemia (even with reticrit injections every week-all ENDED!!! I feel like a new person. I was hesitant but decided to try it. What a difference it made. Good luck

I had the same hemoglobin problem. I needed two units of blood almost every three weeks.
Are you using 5mg Jakafi per day or 2 times 5mg?
I have myelofibrosis. Do you have the same problem?
Thank you for replying.

Why have you stopped taking Jakafi? I started Jakafi treatment on 20mg a day. Unfortunately my Haemoglobin kept dropping as did my platelet count. So now reduced to 5mg Jakafi a day and blood count has stabilised. I can't comment on what would happen with stopping Jakafi. I have a hunch my spleen is a little larger too but it's not giving me any grief.