Patient Comments: Primary Biliary Cirrhosis - Diagnosis

How was your primary biliary cirrhosis diagnosed?

Comment from: pauline, 55-64 Female (Patient) Published: October 31

I was diagnosed three years ago due to swelling on knee.

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Comment from: Nana's boys, 55-64 Female (Patient) Published: August 08

I was diagnosed with Pbc at 38 yrs old. My main symptom is fatigue and now that I have retired I realize it was more exhaustion than fatigue. I was too stubborn to take any time off my management job. I also had severe itching which has now subsided. I function very well during the day but do get tired in the early evening. I have been diagnosed with osteoporosis and do take calcium and vitamin D. I have severe dry eyes and use drops and gel regularly. I now have ultra sounds every 6 months to check for cancer of the liver. I have learned over the past 20yrs to listen to my body and am able to manage very successfully. Very few people even know I have this very serious disease. I exercise daily, eat balanced meals and try to maintain an ideal weight. I am always reading any information I can to keep up with developments on PBC. I have been taking urso since first diagnosed. Other than Urso, calcium & vitamin d I do not take any medication- not even aspirin or anything like that. I feel thankful for the health I do have.

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Comment from: marshar, 45-54 Female (Patient) Published: April 05

I am a 50-year-old female. In late 2010, I had a gallstone attack, but it was small and passed. By 2012, my gallbladder was filled with stones, and in April of that year I had a laparoscopic cholecystectomy. Unfortunately, the surgeon was not on his best and missed a stone. Two weeks later I was insanely itchy, jaundiced, and exhausted. I was referred to a gastroenterologist, who removed the stone by scope, and everyone said the jaundice and itch would recede within a few days. But they only got worse. The gastroenterologist stated that he did a thorough check when he did the scope, and found no lesions, polyps, cancer, etc. My blood work was all over the place. I was treated with hydroxyzine, ursodiol, and Rofact, but the itch, jaundice, and exhaustion did not go away until the end of June. They also did a liver biopsy, and in late August I was diagnosed with primary biliary cirrhosis. Looking back, I realize now the gallstones were a symptom. As was the hypothyroidism I have had since puberty, along with the darkened skin patches along my jawline. I am currently taking ursodiol, seeing a naturopath, and following a strict vitamin regime. I'm waiting to see the local liver clinic in a few months.

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Comment from: Emily, 65-74 Female (Patient) Published: April 05

I am a 73-year-old woman diagnosed with cirrhosis about 10 years ago. Since about age 12, I've had various illnesses that I believe have damaged my liver. I was diagnosed during a regular blood test, which showed elevated cholesterol and liver function. This was followed by a biopsy which confirmed PBC. I have been on Ursofalk for about four years, following an infection and rapid rise in liver readings. Although I realize that no evidence of the disease has been found in children, I was wondering if this is simply because they are not generally subjected to regular blood tests as are those who are aging. From my experience, there were signs in my childhood and young adulthood indicative of liver disease.

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Comment from: Blue, 65-74 Male (Patient) Published: March 20

I was diagnosed with PBC in 1992 and suffered all the symptoms. Urso-25- was the best medication for me. I had a liver transplant in 2000 and it lasted 11 years. I had another transplant in 2011. During 2009 and 2010 I had all the PBC symptoms again. Receiving a liver transplant is a gift of God. Don't give up.

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Comment from: Mrsswannie, 35-44 Female (Patient) Published: March 08

I am 39 years old and was just diagnosed with Primary Biliary Cirrhosis in Feb. 2012. It all started over a year ago when I had my appendix removed. Blood work showed that my liver enzymes were slightly elevated so my Dr. kept an eye on that. Last fall she referred me to a specialist. He sent me for more blood work to check my AMA. That test came back positive. He then sent me for a liver biopsy to confirm his diagnosis of PBC and to see what stage it was at. The results came back positive and showed that the disease was at the very beginning stages, for which I am very thankful. I take 1500mg of ursodiol a day with food. I sometimes get cramps but that is all from the medication. I do not have many symptoms yet, just pain and soreness on my right side. The specialist encouraged me to lose weight and eat healthy and to get daily exercise. I do need to lose 40 lbs to get to the ideal weight for my height so that is high on my priority list. It is going well so far. I am very thankful to God that this has been discovered early. I am resting in Him that I will have many years to enjoy my husband and 4 kids.

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Patient Comments

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Primary Biliary Cirrhosis - Symptoms Question: Please describe the symptoms of your primary biliary cirrhosis.
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