Patient Comments: Primary Biliary Cirrhosis - Symptoms

Please describe the symptoms of your primary biliary cirrhosis.

Comment from: PBC patient, 55-64 Female (Patient) Published: October 18

I was diagnosed with primary biliary cirrhosis (PBC) in 2010 at age 59. I am taking ursodiol 250mg. Symptoms: mild pain under rib on right side, ALP, ALT, AST are mild to medium elevations from normal . High cholesterol. Often tired. Often feel sleepy. I need to rest and sleep more than I used to. Itchy on arms, lower parts of legs. I'm now 62. Urso helps keeping my liver enzymes in normal ranges. Had 1 biopsy that confirmed the PBC. Had ultrasound tests, CTs and MRIs since the diagnosis, and the tests show a very slow progress of the disease since 2010, almost unchanged. I am still working full time.

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Comment from: chrsgonz1, Female (Patient) Published: August 12

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.

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Comment from: Dord, 65-74 Female (Patient) 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.

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Comment from: acasey135, 55-64 Female (Patient) Published: July 08

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.

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Comment from: missraven, 35-44 Female (Patient) Published: June 05

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.

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Primary Biliary Cirrhosis - Diagnosis Question: How was your primary biliary cirrhosis diagnosed?
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