I am a 38 year old female. I found out that I have PBC about 3 years ago. I have had 2 liver Biopsys and several blood tests. I was told 3 years ago that I was at stage 1 maybe 2. My father has passed away from Hepatitis non A non B. Not sure what that means or if it has anything to do with me now? I have noticed that lately that I am more tired and confused. I feel like I am pushing myself to maintain a normal life. My energy is gone so early in the day now. The confusion is now noticed by family members. I am scared and I do not know anyone with this disease. So, I tend to feel very alone and not understood about the changes I am going through. My family does and will not talk about this disease. I keep going to your site to read and understand and if there are any new answers. Published: August 12 ::

I was diagnosed in New Zealand after a first asthma attack at 58 years of age. Blood tests indicated a live abnormality and the diagnosis was confirmed by biopsy. I was having unexplained hypoglycemia on exercise before diagnosis. I have frequent petechiae on the forearms and have episodes of Raynaud’s Syndrome (very painful but no long term effects). I struggled a bit with depression at times. I had my gallbladder removed at 40-ish and have a bile reflux controlled with a minimum does of Questran before bedtime. Actigall and Vit D have also kept me well. I watch my weight and exercise daily to help avoid the dreaded transplant. Over the last year I have had an increasingly dry mouth which is listed on this site as associated with PBC. Mainly I am well and (after waiting to die for a year or two!) resumed my career in health management and remain semi-employed (by choice) at 68. Published: August 12 ::

My diagnosis was preceded by complaints of being tired all the time and having high cholesterol levels, for which I was prescribed Crestor. However, after one year and two blood tests, my liver enzymes were skyrocketing. My primary care doctor referred to me to a gastroenterologist because I was also having gallbladder troubles (no pain, but vomiting). A scan confirmed that the gallbladder was not working better than a 12% rate, so it was scheduled for removal. Meanwhile, the enzyme tests continued at very high numbers (triple normal) even though I'd now been off the Crestor for more than six months. I was told I had primary biliary cirrhosis (PBC) and was prescribed Urso Forte (2 times, 500 mg, daily). The gallbladder surgery came along, and I asked for a liver biopsy. (They were in the area so why not?) It confirmed me as stage 3 PBC. My main symptoms are exhaustion, which I no longer feel ashamed about, and itching. Lately I think my stomach area is swelling on and off during the day, and I'm noticing that my feet swell a lot (similar to when I was pregnant over a hot summer). At night, they seem to want to be soaking in a cool tub of water. Published: July 08 ::

I was recently diagnosed with PBC. I am now 40 I have had elevated liver enzymes since I was at least 29 when I had my gallbladder removed. I am overweight so I have been diagnosed with everything from fatty liver which I do not have to the fact that I must drink heavily which I do not. I had an elevated CA125 level that was found during fertility treatments which failed. Now I know this was because of the PBC. They took my ovaries because of this elevated level thinking I had ovarian cancer, I did not. The itching to my legs is horrible at night I am on ursodiol and my enzymes are normal, but my bilirubin is 3.3. It has not helped the itching at all and I am still very fatigued. Stay depressed a lot due to what this is doing to me and to my husband. I have stage 4 but do not qualify for a transplant because my INR and BUN are normal. Published: June 05 ::

I have primary biliary cirrhosis. I was diagnosed at 40, I’m now 48. I think I had this illness around age 36. I had yellow eyes then, and bloating. I have more of the bloating now, which is bad. I also had my gallbladder removed at 26. My symptoms get me down. I’m tired all the time, which make me very tearful. My cholesterol is high, I have mental slowness, which I am sure is because of the illness. I tend to forget things. I’m glad I don’t itch anymore. Maybe it’s the Urso I’m on. I now have red veins on my face, and cholesterol lumps on the side of my eyes. It keeps me from going out much. Published: May 20 ::

My daughter started itching uncontrollably her junior year of college. She was 20 years old. She was hospitalized for over 10 days and her skin was orange. She was dying. Finally the doctors tried Actigall and she got better, but she missed an entire semester of school. Then, ten years later, her symptoms reappeared during pregnancy, and the baby had to be delivered at 7 months. Now, a year and a half later, she has developed symptoms again, for no apparent reason. I am one terrified mom. It does appear that we have found a doctor who may finally diagnose her correctly. We don't have a PBC diagnosis yet, but her symptoms are exactly as stated here. She is scheduled for a liver ultrasound tomorrow, with a biopsy in the near future. Published: May 07 ::