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Kathy, mom of PBCer

Posts: 1
Joined: Nov 20, 2011

Primary Biliary Cirrhosis

Posted by @kathymomofpbcer, Nov 20, 2011

My 21 year old son was just diagnosed this week with PBC. He has been experiencing symptoms since he was in his teens and has been very sick of and on for at least 3 years. It has been difficult to find the source due to a myriad of problems. His blood markers were present and his most recent CT Scan showed Hepatomegaly. As I understand, this is typically a disease seen in women, most often in middle age and never seen in childhood. He does not fit the profile. He is being scheduled for a liver biopsy to stage his liver. Anyone have any words of wisdom or advice? It is so frightening to watch our son feel so ill and struggle through going to college. Part of me wants to pull him home and protect him, but I know he needs to live as well. I thank God he doesn’t drink alcohol, at least that is in his favor. Anyone else had a teen or young adult go through this?



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Joined: Jan 20, 2012
Posted by @cwebb, Jan 20, 2012

From my understanding, It commonly shows up in the first 20 years of life. What symptoms does your son have and how was he diagnosed?


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Joined: Jan 26, 2012
Posted by @aldrichgirl, Jan 28, 2012

Hello, Kathy. I have had this disease over 15 years. And I am also surprised to hear of it in someone so young. I was told at my diagnosis that it was strictly hereditary. That may have changes since. I was about 45 when I was diagnosed. They didn’t discover the disease until after WWII and don’t know a lot more about it since then. If your son has severe itching, the medicine URSO will eliminate that completely. I used to scratch myself until I was black and blue and have no problems as long as I take the med. I have to see my specialest once a year now because I have an enlarged liver with fatty deposits. But so far no real problems from it.

Until the past 5 years my medical doctor would just check my bile levels. I hope your son’s condition is in an early stage. I was in stage2 and don’t think I have progressed too much. You do have to be very careful about meds that are processed through the liver and take ones that go through the kidneys. And be sure and keep an eye on those kidneys. Another symptom is lethargy and as far as I know there is nothing to remedy that. It can mean a major lifestyle change if he was a very active person. But with time you learn to work through it and push on. Hopefully he can live the rest of his life in the same stage he is now. It is possible if you keep the bile levels under control. I will be praying for you all.


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Joined: Sep 02, 2011
Posted by @mayolily, Mar 6, 2012

Kathy, I would like more info from you, what is URSO? I am late 60’s and going thru some similar issues. Anyway we can communicate directly (not certain we want to share personal em add at this site).


Posts: 103
Joined: Jan 19, 2015
Posted by @mrsdeecee, Tue, Jan 3 3:24am

Instead of liver biopsy which comes with risk they can give your son a fibro scan of liver, Your right he does not fit profile I have PBC 54 yr old woman?Their are quite a couple diseases that mimic PBC like hemochromatosis and others God Bless your son Deena

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