I was diagnosed four years ago with systemic mastocytosis. I've had two bone marrow biopsies and expect a third one soon to monitor where, on the mastocytosis spectrum, my disease progress is set. I am on 9 different medications including Ayvakit (avapritinib), Xolair, montelukast, famotidine (sp?), Breo (inhaler), prednisone, Allegra (otc), levalbutarol, and epinephrine pens on standby for anaphylaxis. I have had 8 nearly fatal anaphylactic episodes with tremendous pain associated with each event. It took the whole team at Mayo a while to dial-in the Ayvakit dosage. The first dosage (a bit too much) resulted in neurological issues. We stopped the medication, waited, then restarted with a better, sustainable daily dose.
I am extremely pleased with the team at Mayo and our teamwork together. This is a complicated disease. Mast cell degranulation is realistically a mortal threat in my case. Keeping the medications on a level trim requires tuning and retuning. This team-process is simply what the disease requires. And that is without considering the threat of a slow, steady mast cell proliferation and progression, which is what the next bone marrow biopsy will help determine. Again, the team is on it.
Good news is that, when the medications are on trim, I can continue to work, take long walks outside, and even play some golf and enjoy my family and my life. Yes, there is pain and fatigue. But there is also a good probability that I will see tomorrow and the day after that, and so on until we lose the thread.
It is possible to find contentment even in the presence of the disease symptoms and the disease process. I wish everyone engaged in the journey to find both peace and ease.