February 28, 2017 is rare disease day (the last day in February each year).
On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases. This day of awareness was launched in Europe in 2008 by EURORDIS; it is now observed in almost 100 nations.
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On reduced prednisone; treatment door number three opens on Monday with an infusion of Rituxan (rituximab).
Continue reading “Life with Mikey, 6”
Had a better week than in the prior report. “Better” being highlighted by playing pool with my team. 🙂
Much easier to eat. But the second trial of MMF led to the same conclusion as the first: my body doesn’t tolerate the drug.
Continue reading “Life with Mikey, 5”
Had a bad week followed by a pretty good one.
Continue reading “Life with Mikey, 4”
Thanks to my brother in law for greasing the wheels at UW, nice to have a doctor in the family. 😉
After initial rapid response to boosted Prednisone and addition of Mycophenolate, body plateaued as far as sore improvement. Appetite, on the other hand, has continued to soar through the roof, in part because I’m not getting a signal from the stomach that it’s full. Whether this is the drug(s) or reduced saliva due to not chewing … unknown. Energy is better (fewer naps). I’ve regained a couple of pounds. And had my first setback.
Continue reading “Life with Mikey, 3”