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Just Diagnosed with Primary Sclerosing Cholangitis

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Ulcerative Colitis
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Posted 3/27/2009 7:03 PM (GMT 0)
Some of you might know this already but I've been having a number of tests performed on me since dx with UC back in Nov of '08 because of high enzyme levels in my liver.  I had a MRCP (like an MRI) done a week and a half ago and from those reults I was diagnosed with PSC, a rare liver disease that affects the bile ducts.

Yea, it stinks that not only do I have to worry about PSC but now I have to worry about a rare liver disease.  The good thing is that the disease takes a long time to kick in and my GI spotted it fairly soon.

Posted 3/28/2009 6:46 AM (GMT 0)
Hi...totally sucks regarding your diagnosis...I don't remember you were being checked for it, but it's good the doc did so.
I'm impressed you didn't have the ERCP....to me, that's a good thing.

Did the doctor put you on URSO?

PSC isn't as rare as one might want to believe. The goal will be for it to not be into an active state. Yeah, it's good it's slow at progressing for those of us it does in that pattern. It doesn't for all, however..

Do the research...it's quite scary to do the reading, however....but it's still good to know.

You could try http://pscpartners.org/  for some good information on PSC.

quincy

Posted 3/29/2009 2:57 PM (GMT 0)

Thanks Quincy,

Yea, my GI did put me on Urso, do you know much about it?

I'm trying not to worry about it to much and just kind of let the course play itself out but it's very hard not to worry and research all day...

Posted 3/29/2009 4:01 PM (GMT 0)
URSO work on thinning your bile so it will flow better past the restrictions in your bile ducts caused by PSC. The damage to your liver over time is due to the bile not being allowed to flow out naturally. URSO is thought to help as it generally lowers ones liver function tests. Many to "normal" ranges. The web site Quincy recommended has more PSC info than you would ever want to know. The key is not to "freak out" as you read. The good news is that PSC can generally be "treated" with a liver transplant if it gets that bad. Might be 10-20 years (or never) before the disease runs its course. Pretty sure Mayo has been doing (or did) a study on high dose URSO.

I am "thought" to have PSC and have been on URSO for 4 years. It freaked me out originally, but now I have taken the Mayo clinics advice to "go live your life". If it gets bad down the road we will deal with it then.
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