Re: I need some advice please (off urso?)

[Guest guest]

Hi , Rick, Joe:

After years of high liver enzymes I finally came down with terrible

itching four years ago. That is when I was diagnosed with PSC and

started Urso. I have been itch-free until last August, EXCEPT for one

month a year and a half ago. It took me a little while to put it

together, but I realized that I had picked up my Urso from the

pharmacy and LEFT IT IN A HOT CAR (110F easily) for a whole

afternoon. It took about two weeks for the itching to come back, and

it also took about two weeks before it went away again, once I

switched back again to Non-Fried Urso.

Last July/August the itching also came back, and it required an ERCP

with catherization to stretch out my bile ducts. Currently it appears

that I also need Phenobarbital on top of the Urso to keep the itching

at bay.

Good luck, Wim (aka )

(when I had an ERCPI have been on Urso for for years

>

> I would look for a new doctor if he thinks that PSC does not cause

itching.

>

>

> As far as Urso goes, I went off of it for a short time in 2005.

All of my

> liver numbers went up and I felt horrible. I went to a new GI

doctor who

> raised my previous dose and I went back to being asymptomatic. I

truly

> believe that I went 17 years before transplant because I took

Urso.

>

> Joe

>

> PSC & UC - 1990; Liver Transplant - 2007

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of megasam2

> Sent: Tuesday, February 03, 2009 12:46 AM

> To:

> Subject: I need some advice please

>

>

>

> I asked about itching last week for my husband Rick. His doctor was

> back in the office today and had his nurse call to say that he

thinks

> it is an allergic reaction to something except that he hasn't

changed

> anything. His bilirubin is 3.2 but the other liver numbers are

> normal. But ever since he started taking Urso his numbers have

> always been normal, even during smaller cholangitis attacks. We

both

> know it isn't an allergic reaction to something, my husband has

never

> had any allergies. And the itching is all over his body and is

> constant. His eyes have gotten more yellow and I can see a bit of a

> yellow tinge to his skin now as well. Rick has an ERCP scheduled

for

> the 25th of this month, since the doc thinks its not PSC he said he

> is in no hurry. Rick is thinking he doesn't want to take the Urso

> anymore because he feels like it is just masking what is really

going

> on. Does anyone have any experience with stopping Urso and if it is

> a good idea or a bad idea. Any advice on this situation is greatly

> appreciated. We are both so confused and frustrated now.

>

>

> wife to Rick

> Crohn's, PSC, Spondyloarthropathy

> www.jaimeandrick.blogspot.com

>