View Full Version : Biopsy results!!!!

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.

11-30-2012, 12:38 AM
i am so happy that they are able to reduce some medications.

time for him to start the process of rebuilding himself.

11-30-2012, 05:18 AM
We have slacked on watching his sodium and going into winter is really gonna be tough trying to get to stay somewhat active, but I guess he's gonna have to become more aware of his own life and take charge. LOL! Don't see that happening. He's happy that she took them away, but I don't think he realizes that he's sick, even though he feels good. Wants to "normal". Wish he'd understand that he's not "normal". But i guess it's hard to think like that when you're 14 yrs. old.

So, more diet aware we will be. Or try anyway.

11-30-2012, 10:32 AM
Glad the news was so good! As for the oral steroids, no reason to worry. Your doctor only wants to do it short term. Heck, I have been on a higher dose then that for years lol.

try to enjoy the good news and not worry. Seems like you have a doctor that is on top of things and he is getting better! That is all that matters right now