11-29-2012, 07:49 PM
Well, Dylan's nephrologist called tonight to give us the results of his recent biopsy. Very little activity from the lupus and the TMA, his kidneys have really taken a beating. He was so sick in the beginning that they treated him very aggressively so she wasn't surprised that 1/3 of the kidney has fibrosis or scarring, but when they did the biopsy they thought they got 17 gromileri and they actually got 47! Out of those, only a couple had scarring so she said there was a disconnect with that. She is STOPPING his eculizamab AND his big dose of steroids!!! I guess the downfall is that she is raising his oral dose of prednisone to 20mg. every other day for 4-6 weeks. She doesn't want to take everything away. Overall, I'm happy and I asked Dylan if he was okay with it and he said yes. I am calling back tomorrow though to cancel some infusions and schedule dr's appointments. Little nervous about stopping these and wonder if I'm really gonna be watching him like a hawk for every little "hiccup". He'll still have his infusion of pentamodine every 4 weeks but I think we can deal with that.