Patient Comments: Primary Biliary Cirrhosis - DiagnosisHow was your primary biliary cirrhosis diagnosed?
Published: June 01
I was diagnosed with PBC this past Thursday. I originally went to my primary doctor because I was having indigestion, heart burn and pain in my left jaw. I was thinking heart disease. Dr. ordered a blood workup but referred me to a cardiologist immediately. When he received my blood results, the liver enzymes were elevated so he sent me to a GI specialists. After more tests, ultrasound, PBC is the conclusion. I will be having a follow-up to determine if a biopsy is to be done to determine stage and treatment. I have no symptoms other than those above except that I now notice tenderness around my liver (in my head?). I must say that I'm in a bit of shock right now as I research this disease but am hopeful that we caught early and keep it in check. I have a physical and blood work done annually and everything has been perfect up to now. Wow...life changes quickly. Was this comment helpful?Yes
Comment from: lendiwarden, 55-64 Female (Patient)
Published: April 11
I had breast cancer in 1999 and a series of other health problems. In 2003, after routine exams, they found I had gall stones and when having the surgery for that looked around and the surgeon noticed that my liver didn't 'look' right. After the surgery and the doctors thought it was hepatitis. Further testing confirmed I had PBC. Was this comment helpful?Yes
Comment from: dd, 55-64 Female (Patient)
Published: April 11
My PBC was diagnosed after a blood test revealed very high levels for all my liver enzyme levels. This followed a 5-year period of being on Hormone replacement therapy from age 50-55. Was this comment helpful?Yes
Comment from: bunno1, 55-64 Female (Patient)
Published: March 16
I'm a 59 year old female. About 7 years ago my liver enzymes showed elevated during routine annual blood tests. I have been being screened for primary biliary cirrhosis (PBC) once per year since then. I was finally diagnosed this year after the annual AMA test came back positive and a liver biopsy indicatd markers consistent with PBC. My mom was diagnosed with PBC in the early 1970's when they knew little about the disease. She became a subject of research through the University of Chicago Hospitals until she passed away in 1982 from liver failure. I have no significant symptoms other than itching at the very top of my left rib cage in front. I've had the itching for about 3 years and it intensified about 6 months ago. However, I've been on Urso for 2 months now and the itching has all but stopped this week fo the first time. My doctor said he has about 6 other female patients with PBC. He believes with diet, excercise and Urso, it is entirely possible for one to live a full and normal lifespan. Was this comment helpful?Yes
Comment from: Cathy, 55-64 Female (Patient)
Published: January 25
My alkaline phosphates have been elevated for the last 12 months. After having an ultrasound and then a liver biopsy, I have been told I have PBC and will be starting URSO in a few days, 250 mg 3 times daily, I am in early stage 1. The doctor said it was lucky we caught it early. I have had no known symptoms, but I did have veins stripped about 6-8 years ago because 1 leg was 1/2" larger than other. I believe I read somewhere where this is one symptom and have had arthritis for 20 or more years in both knees. Was this comment helpful?Yes
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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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I have had chronic fatigue syndrome diagnosed in 2007. After 13 months seemed so much better. Contracted flu in 2011 and reactivated cfs and hit menopause. Had routine blood tests which indicated Ana and AMA serology etc was positive. A new really smart gp picked it up and did further testing. My sister also has PBS and has had for 10 years. She is on cortisone etc. I have also had blasto cystis hominis, helicabactor, clostridium difficlile and 2nd line treatment for all with millions of antibiotics - not good for the liver. I will now really watch everything that goes in my mouth and no alcohol.