Primary Biliary Cholangitis and Cirrhosis (PBC)


Please share your experience with primary biliary cirrhosis (PBC). Submit Your Comment

Comment from: Mo, 65-74 Female (Patient) Published: July 26

I was diagnosed with primary biliary cirrhosis (PBC) in 2006. I went to my doctor on a few occasions complaining of fatigue, rashes and severe itching of my forearms. I was referred to an internist who did a thorough exam with extensive blood work, then I was sent to a hepatologist. He scoped me, and did a liver biopsy which confirmed I had PBC stage 3. I am on Urso. I also have Sjogren’s syndrome, osteopenia and am now followed up with 6 monthly MRIs as I'm now stage 3/4. I'm active, eat healthily and will be shortly started on Ocaliva.

Comment from: Alan J, 55-64 Male (Patient) Published: July 23

At age 51, 9 years ago I developed a little white lump on my left eyelid. My general physician (GP) sent me to a very young dermatologist. One look and he asked if I had liver problems. No I said, thank goodness he was fresh from school and had great memory. I think you have primary biliary cirrhosis. I will ask the GP to order tests. I confessed a life of drinking made it likely. I know now it's not related; regardless of the stigma. I can't remember his name but think of him often with high regard. Instant answer to years of mystery.

Comment from: Chrystal, 35-44 Female (Caregiver) Published: July 11

I was just diagnosed with primary biliary cirrhosis (PBC) last month. They say I have mild fibrosis so far. I just started 1,000 mg ursodiol today. I have fatigue, and swollen lymph nodes in abdomen. Another test suggests I have something else going on with this. Because I had a high ANA along with AMA. I'm pretty healthy. I don't like medicines, but I guess this changes that. They say to try to slow this I need to try ursodiol. Also taking a multi vitamin now, and vitamin D. Hoping it works. Thanks all.

Comment from: Rosy, 55-64 Female (Patient) Published: April 17

I have had primary biliary cirrhosis (PBC) for 28 years and have been on Urso for about 8. I am AMA positive with Sjogren’s, Hashimoto’s, polyglandular dysfunction, myasthenia gravis, and pulmonary fibrosis. I got it from hair color - octanoic acid also known as caprylic acid from coconut oil. I struggle to eliminate these toxins from my diet and beauty items. We keep getting re-exposed so we never get better. It is in everything.

Comment from: Angle , 55-64 Female (Patient) Published: October 16

I had primary biliary cirrhosis (PBC) for 1 year after having my gallbladder removed. I am on Urso, vitamin D and Elestrin for underactive thyroid. I also take probiotic every day. I am doing well except when awful fatigue kicks in. I get checkup done every 6 months and blood work every 3 months. Probiotics help prevent kidney infections.

Comment from: sandy, 65-74 Female (Patient) Published: November 13

I have bowel movement daily, no constipation, but it is pebble-like and hard stool after the use of antacid, antibiotic, painkiller and one other drug.

Comment from: Suffercat, 55-64 Female (Patient) Published: June 12

I've had autoimmune hepatitis (AIH) and primary biliary cirrhosis (PBC) for about 5 years, stage 2. I have all the symptoms from the start; you name, I got it. I'm AMA negative and ANA positive and have overlaps. Recently my palms turned red. The doctors are telling me that I have progressed. I recently had another liver biopsy and am awaiting the results. Apparently because of the above, I will progress faster and have a harder time of it. I've been on Urso for a year with little response. I am 60 and female. I'm sincerely hoping to make it to 65 as the doctors told me I would die of a heart attack before I had a chance at transplant, the esophagus varices being the reason. I'm not jaded and understand what will be will be. I'm doing all I can to take care of myself and get as far as I can. I've done over 4 years of research and read hundreds of letters from people with PBC. It amazes me that so many of us have what I consider valid normal questions that are not being addressed by doctors. Many have their symptoms ignored. Many don't have a doctor that has formulated a lifelong plan. Many, including me do not have a working relationship with our doctors. I have learned to take a list of questions every single time I go in. I am relentless in telling them each time about my symptoms. After 4 years, I'm finally getting somewhere with them but, it seems to be after my palms turned red that they started taking this very seriously. Before it was 'you'll die with it, not from it'. I'm heartbroken this is not the case with me and I should have been told this long ago. If I can help at all, I say this, take charge and demand the answers you need. This is our lives we are talking about, learn to stand up for yourself and, understand these are diseases that are still being investigated and researched. Sometimes the doctors are learning things with us. Finally, best wishes and love to all who are sick and hurting. My heart goes out to everyone. Peace.

Comment from: Kelzduncan, 45-54 Female (Patient) Published: May 03

Great info! I was diagnosed 9 years ago with primary biliary cirrhosis PBC. I responded to ursodiol. Not 100 percent but well. I'm still stage 0 to 1 and not too much change in the liver function test numbers. My doctor is confident I will never progress to cirrhosis. I keep my fingers crossed.


Long-term heavy alcohol consumption can cause: See Answer
Comment from: Sunny, 55-64 Female (Patient) Published: December 05

I was diagnosed with autoimmune hepatitis stage 4 at the age of 50, and now I am 64. We went to see a specialist in autoimmune diseases, he diagnosed me with primary biliary cirrhosis (PBC), and treated me for 11 days, with ALA (alpha lipoic acid) and B complex IM. I just started to have all symptom 2 1/2 years ago. I have tried every Western medicine to stop pruritus (itch), nothing worked except Marinol, and it takes 45 minutes to react, too long. I do a lot to keep myself comfortable, I have ALA IV infusions with high amount of B complex IM.

Comment from: sandy, 55-64 Female (Patient) Published: August 03

I found out that I had primary biliary cirrhosis (PBC) three years ago. And it was just by chance that I found it out while having a test for something else. The lab called me and asked me if I drink. I said no and they said my liver is bad and I need to see a liver doctor. The doctor said that I was in the early stages of stage 2 PBC and have been since I first found out. Mine seems to be slow and I hope it stays that way, but I know that it can speed up at any time. I am so sorry for the people whom I had read about who found out about it and are in stage 4. My heart goes out to them. For myself I think, well, it could be worse. It's better than being told that you have cancer and have six months to live. Yeah, it could be worse.

Comment from: Judy, 65-74 Female (Patient) Published: March 20

I was diagnosed in 2005 with PBC after a routine blood test. I had been having nausea. I went on ursodiol 300mg 3 tablets twice a day plus Flaxseed 2000mg 2 cap twice a day. I feel normal except for leg weakness, constipation, a feeling of fullness in right upper abdomen occasionally. I have no dry mouth or eyes or skin concerns yet! It"s been 8 years and now I"m concerned as to what is next for me.

Comment from: Brandon2013, 25-34 Male (Patient) Published: August 20

I was recently diagnosed with PBC. I am told I am stage 4. My symptoms were, darkened urine with thickness to it, dry eyes, dry mouth, severe fatigue, abdominal pain, and excessive itching. But what got the ball rolling on finding out what it was, was the excessive weight loss to 160 lbs in 11 months and still dropping. My blood Work showed elevated everything. The biopsy showed progressive cirrhosis and granulomas.

Comment from: sam, 65-74 Female (Patient) Published: August 06

I was diagnosed with PBC after a routine blood test many years ago. I have been lucky because I had very few problems for many years except for dry eyes and mouth and joint aches. I am now 73 and have most of the symptoms especially the fatigue and tiredness. I take URSO four times a day and have 6 monthly ultra sound and blood tests. I have joined the PBC Foundation on line from whom I was sent a information file which was very helpful.

Comment from: one-in ten, 65-74 Male (Patient) Published: July 09

I was diagnosed with primary biliary cirrhosis (PBC) in early 2004. I also have type 2 diabetes and low thyroid hormone levels. I was dreadfully tired and achy all the time. I had itching all over. I also suffered from dry mouth, poor short term memory, and difficulty speaking. I now take rifampicin which has greatly helped relieve my itching. I had a minor heart attack several months ago when I had inflammation in the sac around my heart.


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