Re: Just told I most likey have PSC

June 22, 2007

Hi Jake,

This site is full of wonderful people to answer your questions. It is

a great community focused on research, information and fundraising as

well. Naturally, it draws folks who are having problems due to

advanced PSC. The experiences people talk about here won't all happen

to you. And you may not reach the point where PSC gives you persistent

trouble for many, many years- there is a story on the Mayo clinic

website about a man who had PSC for 40 years before transplant!

It's been 15 years since my diagnosis and I have never had significant

symptoms. I came to this site two years ago because my docs said

things were starting to go downhill. My endoscopist managed to open up

a major duct on the third try, and now things are looking much better.

Using information I got here, I changed some of my meds (high-dose

URSO 30 mg/kg/day) and added fish oil to my diet. My liver enzyme

levels are now 50% lower than they have been in 15 years, and are well

in the normal range. I go for an MRCP once a year to check things are

still good. The PSC Partners newsletters are fonts of information and

support- you might like to check those out via the link on the opening

page of the yahoo site.

Best,

Martha (MA)

UC 1979, PSC 1992

> I'm a little confused about what my future may hold. The doc told me

> that it can take decades before a transplant is needed, but some of the

> websites I've been to say about 10 years. I know it's a little

> premature because I haven't seen the results of my ERCP, but I just

> can't stop worrying. What should I expect? Also, I was wondering what

> kind of questions I should be asking at my return visit? Are there

> certain specific test results I should be finding out about? Certain

> levels?

>

> Any help is greatly appreciated-Jed.

>

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