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Just was diagnosed with PBC. Would like to connect with others

Posted by @pia in Just Want to Talk, Jan 28, 2012

Just was diagnosed with PBC. Would like to connect with others

aldrichgirl likes this

Posted by @aldrichgirl, Jan 28, 2012

Pia, I also have this disease. I was diagnosed about 12 yrs ago. Really threw me a loop at first. I was told they new very little about it and it wasn't even discovered until after WWII. But that someone, somewhere in my family had to have had it because it was hereditary. I was also told I was in Stage 1 and could stay there the rest of my life or could be in Stage 4 in a year needing a transplant. I hope your news wasn't that grimmly given.

But stay hopeful. I visit my liver specialist once a year. And am none the worser for the past 12 years. On my last visit, last Nov., the dye-contrast cat-scan revealed something that required a follow up dye-contrast MRI. (I didn't have to start having the cat-scans until 2 yrs ago.) The MRI revealed fatty deposits, which are normal with the disease. The doc said they can look like tumors on the cat-scan so they have to do the MRI to be sure what they are. I also have an enlarged liver from the disease. I am 60 yrs old so I think I have fared extremely well. I also take URSO which contrlols the bile level.

I don't know if you have experienced it yet, but the PBC causes profuse itching which is caused by a rise in the bile level since your liver doesn't process it now. As long as I have the URSO there is absolutely no itching. Previously I had scratched myself until I was black and blue. The itching feels like it is coming from your bones out. I believe it is dosed based on your weight, but if you start having the itching it's time to get to the doctor.

Another horrible symptom, that nothing can be done about, is real lethargy. That you just kind of have to learn to live with and work through. But you do learn to push through it. I have been on the same dose of URSO for at least 10 years now. I wish you the best of luck with this and will be glad to answer any questions you may have or just listen. I don't know if they let you put email addresses on the community page or not, but if you want to connect that way we can try something there. Take care, God bless and best wishes with your progress.

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