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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Primary Biliary Cirrhosis - Experience Question: Please share your experience with PBC.
Primary Biliary Cirrhosis - Symptoms Question: What symptoms did you experience with PBC?
Primary Biliary Cirrhosis - Diagnosis Question: Please share your experience with the diagnosis of PBC.
Primary Biliary Cirrhosis - Complications Question: What complications have you experienced with PBC?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.