No More Jakavi

As of September 2024, I no longer qualify for the Jakavi compassionate program. I had a lot of anxiety when I received this news. I had finally found something that made me feel good and now it’s being taken away. What would happen when I stopped this medication? Would I have another flare up forcing me to start prednisone again? Anyone who has been on prednisone or knows my experience with it, can imagine my frustration with this possibility.

It has now been 3 months since I have stopped taking Jakavi for my GVHD. The Rezurock alone seems to be doing the job on it’s own. What a relief!

During my most recent visit with my Hematologist he decided to discontinue a few more of the drugs I’ve been taking for the last 10 years. These drugs however, I am more than happy to part with. I’m currently taking only 3 medications daily! I can’t remember the last time I could say that. My stomach and my bank account are happy with this decision as well. Although this is all great news, I still left that appointment in tears. My Hematologist informed me he is officially retiring. I was happy for him to finally be able to hang up his coat but at the same time I felt a little bit of unease. That was the last time I would see him, the man who saved my life and took care of me for the last 10 years. The one who knows my story from the beginning.

In the new year I will meet a new doctor who will continue to follow up with me. I know I will be in good hands. All I can hope for in the new year is the same thing I’ve been praying for for the past 10 years, good health and happiness.