Brian started Soliris last Monday. To date he's had two doses. We hold high hopes that this drug will be the answer, and so far it is working well! I have to remind my blog readers, though, that this drug is not a CURE, it is a lifelong treatment. His numbers yesterday were as follows (I'll put yesterdays numbers first, and the approximate number's he's had this year in brackets just to put it in perspective!)
Platelets: 211 (anywhere from 60-180 during non blitz weeks)
Creatinine: 126 (it's been as low as 130, and as high as 160. Lower is better. Normal, for Brian, is 120ish)
Hemoglobin: 113 (It's been stuck in the 90-100 range, normal is 135+)
So... I'm trying not to get my hopes up. But this is looking good! He actually has color in his cheeks for the first time in ages, and he is no longer dealing with constant nausea and fatigue. I've even seen him chase his kids around the playground without getting winded. I don't remember the last time I saw that! It's very encouraging.
