Patient Comments: Primary Biliary Cirrhosis - Symptoms

Question:

What symptoms did you experience with PBC? Submit Your Comment

Comment from: crsstena006, 45-54 Female (Patient) Published: October 24

I am experiencing a lot of hair loss recently. I have had PBC (primary biliary cirrhosis) for 10 years and this is the first time that this has occurred. I asked my doctor and he advised it could be the new medicines I have been trying this year or that the liver is getting worse. He advised to use hair products for growth but nothing seems to help. Wonder if anyone else has had this same issue. I feel as though my thick hair is decreasing a lot with each hair shampoo and even the normal daily routine of brushing my hair.

Comment from: Eat my dust, 19-24 Male (Caregiver) Published: October 22

My son was always healthy, an athlete. I had an easy pregnancy at the age of 40. He is now 22 years old and 2 years ago we found out he has primary biliary cirrhosis (PBC). He is an only child. We lived on his grandparents' property (10 acres), he drank well water, and the San Luis Obispo airport was down the street. His first symptoms were itching and he said he was tired. He doesnt look sick. Blood work takes a toll on him and he is suffering from depression. He has had emergency surgery for a kidney stone and had liver biopsy.

Comment from: HalcyonMama, 35-44 Female (Patient) Published: April 20

I was diagnosed with primary biliary cholangitis in 2012, after having babies in 2008 and 2010. My liver enzymes remained elevated after the pregnancies and eventually PBC was diagnosed. I take 600 mg of Urso twice a day. Before I was diagnosed I was struggling with fatigue and viral infections that would take forever to get over. Once I started the medication, my energy levels normalized. I don't have quite as much overall energy as I did before, but I can still function and maintain a very busy and full life that includes working, the children, and several hobbies. I agree that taking the best care of myself helps me feel even better; less sugar and gluten, more exercise, more sleep. Besides occasional fatigue I do sometimes have mild itching in my extremities. My bone density is still normal. My biopsy in 2012 was stage 2 PBC but more recently I had an elastography that showed a near normal liver. Don't be dismayed by older information online that shows lowered life expectancies. My doctor, who has spent his entire career conducting PBC research, says that there are two kind of patients: ones that unfortunately progress quickly and others that remain stable for decades. So chances are if you are stable for a few years you are in the 'wimpy PBC category'.

Comment from: curly4068, 45-54 Male (Patient) Published: January 12

I have burning sensations as well as itching due to PBC (primary biliary cholangitis) and it seems that my immune system is week as I get sick easy.

Comment from: mike, 55-64 Male (Patient) Published: May 31

I had severe ulcerative colitis (UC) in 1984, and 4 surgeries to remove colon, complicated by cirrhosis. They thought the cirrhosis was caused by the UC, wrong! I was diagnosed with PBC (primary biliary cholangitis) in 2017, finally someone figured this out. Just in time, because my liver enzymes were way off for years, and I had esophageal varices. My old doctor never sent me to a hepatologist. The specialist put me on ursodiol, and liver enzymes are within norms now. The specialist was stunned that I was never on ursodiol before. I am of age 60 now.

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