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.
i am so happy that they are able to reduce some medications.
time for him to start the process of rebuilding himself.
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.
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