Re: Noah's update after a few days on the Rowasa

[Guest guest]

Thank you for the reply Ami. I guess they don't think it is that...

I am peaved too. Back in April they pulled him off the immune

suppression therapy after Meili-Vergani at Kings College in the UK

suggested after reviewing his chart that he might have Autoimmune

Sclerosing Cholangitis versus the PSC which just means that it might

respond better to steroids during a flare basically... and that it

needs to be mediated by autoimmune therapy (ie. 6-mp or imuran or the

like). Shortly thereafter, Pitt pulled him off the Imuran. I asked

why when his labs were indicative of the ASC and I was told that they

did not agree... but not a real clear indication of WHY. So as to be

a compliant patient... and because I want to have him tx'd at Pitt...

so I don't tick these CHP guys off... I complied. Guess what the

gastro put him back on today?! Imuran. Isn't that special?! I

guess I am glad he doesn't have so much pride that he is able to do

just that. I just hope nothing went so terribly wrong while he was

off of it.

Noah is in so much pain tonight. I am pissed! He even said... it

does take about this long for all of it to get out of his system.

I guess his UC is autoimmune after all... and I am guessing his

sclerosing cholangitis too. Will it move quicker or slower? Do I

trust anything they have said? They also said that they don't think

he has cirrhosis even though the 3 others who read his bx of his

liver think he does. HUH? Do pediatric and adult pathologist differ

in their readings?

Honest questions here.