Patient Comments: Primary Biliary Cirrhosis - Diagnosis

How was your primary biliary cirrhosis diagnosed?

Comment from: Sandy, 45-54 Female (Patient) Published: November 21

My doctors thought at first it was gall bladder so they removed it and during surgery did biopsy of my liver with diagnosis of PBS now the itching is making me crazy!

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Comment from: Lucy58, 45-54 Female (Patient) Published: October 11

I am a 53 year old female diagnosed with PBC 8 years ago. Liver enzymes were high and unaffected by diet. Liver biopsy showed PBC but asked my GP to run the antibody test to confront my denial. Results dispensed with denial. I am prescribed 750 mgs of urso twice a day but I don't always eat two meals a day and so only take the drug when I eat to avoid diarrhea. I am having my gallbladder removed next week due to pain from gallstones. I have some itching. I am tired. But...my liver panel, with the exception of the alk phos, is normal since the URSO. Cholesterol is very high (crestor every other day to get some control of that) and triglycerides are ridiculous. But, I thank God for the URSO and my wonderful gastroenterologist. My daughter is 14 and I plan to live to spoil her children. Life is good.

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Comment from: kas, 55-64 Female (Patient) Published: August 03

My diagnosis came when I was approximately 40. I have always had high cholesterol numbers, and was suggested a number of diets. My doctor 13 years ago decided to test for primary biliary cirrhosis and bingo I have it. I began going to a Gastroenterologist and started on Urisiodial. I have been taking it in increasing amounts since. I have no medical proof but, I believe my mother had PBC. She had a swollen, distended belly, yellow eyes, yellow skin and poor breathing. My sister was recently diagnosed. Urisiodial was tried but, is of no use. She is jaundice (eyes and skin), great loss of body strength and body mass. She is awaiting a liver transplant.

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Comment from: O''liver, 55-64 Female (Patient) Published: May 16

I have been living with primary biliary cirrhosis for more than 15 years. A liver biopsy confirmed it. I have never known anyone with it. I have had symptoms since my early 20s. I spent one year with joints that were so swollen we had to pay someone to help me take care of my children. My skin always had rashes, terrible itching, allergies, and asthma. I was told I had rheumatoid arthritis. As of today, I do not test positive for it. The depression is bad. You are always in pain. I also have had Raynaud's phenomenon since my early 20s.

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Comment from: 25-34 Female (Patient) Published: February 04

I am a female of 34 years. I was diagnosed with liver problems after my second child was born. He is now 8. I was diagnosed with primary biliary cirrhosis when my portal vein burst a few years ago. I always have itching of the skin. My legs and back have many spider veins popping up and my skin color is darkening as the days go by.

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Comment from: reddress, 13-18 Female (Caregiver) Published: July 06

My daughter is just 13 years old. Her PBC was diagnosed when she went to a new pediatrician because she was having chest pains and her abdomen was swollen. She had itchy skin, waxing and waning jaundice, bone pain an extremely enlarged spleen and liver and what looked like a rash. After extensive testing and finally a liver biopsy, the diagnosis was confirmed. This is extremely rare in children and she now requires a full liver transplant.

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Comment from: redgirl, Female Published: April 05

At 51, I was given a clinical diagnosis of PBC. A routine blood test showed elevated liver counts. Further blood tests showed elevated liver functions. The liver biopsy showed some abnormalities, but inconclusive to give a positive PBC diagnosis. It has been 5 years. I still feel healthy. I exercise regularly, and live a full life. It is hard to take the whole thing seriously under the circumstances.

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Patient Comments

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Primary Biliary Cirrhosis - Symptoms Question: Please describe the symptoms of your primary biliary cirrhosis.
Primary Biliary Cirrhosis - Personal Experience Question: Do you or someone you know have PBC? Please share your experience.

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