Patient Comments: Primary Biliary Cirrhosis - Diagnosis

How was your primary biliary cirrhosis diagnosed?

Comment from: MomofFour, 35-44 Female (Patient) Published: October 25

I began consistently having elevated Alk Phos after routine physical flagged me at 29. Was tested for antibodies at the time and nothing was found, followed up annually with the GI. Alk Phos remained elevated. Went to Iraq 2008-2009. When I came home in June of 2009 I went back to the doctor for a screening. My cholesterol was 364, and alk phos was still elevated. I started itching shortly before returning home, the doctor treated me for allergies repeatedly with no relief, even gave me medicine for depression, nothing, finally went to the GI for follow up, when he saw me itching, he asked if I had a rash or anything associated with normal itching, I said no, he asked if it was everywhere, and I said yes, he repeated the test for anti-bodies and low and behold I came up positive this time. Had the liver biopsy but it only revealed a fatty liver. I was 36 at the time. My primary care physician has had me on simvastatin for 3 years now, my cholesterol dropped as soon as I was put on it, itching also subsided, however when my cholesterol hit 120 she quadrupled my simvastatin to 80mg and I have been on that about a year.

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Comment from: Jay, 65-74 Male (Patient) Published: June 19

I had primary biliary cirrhosis undiagnosed for something like 20 years. My primary doctor, an internal medicine guy, consistently just asked me how much I drank, and assumed I was in denial when I told him I NEVER drink. About four years ago, I took it upon myself to find out why my liver enzymes were so wacky (GGT 300X normal) indicating liver disease or alcoholism. I went to cancer centers. Diagnosis: myelodysplastic syndrome (which was wrong). Finally at my insistence, I went to a heptologist who did a liver biopsy and found that I have primary biliary cirrhosis, exceedingly rare for a guy. My symptoms include lower leg rash and itching (I use two tubes of Cortizone 10 cream a month) and afternoon exhaustion. I keep things under control with Ursodiol, 10mg of Nadolol, and a timed release antacid every day. So far I am coping very well. I am 69 years old now, and hope to die of old age, not liver failure.

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Comment from: thimble001, 55-64 Male (Patient) Published: June 19

I am a 57 year old man, diagnosed 7 years ago with primary biliary cirrhosis. I went very jaundiced and visited a doctor who had me in hospital the same day. Seemingly, the initial symptoms are similar to pancreatic cancer, so that gave me a fright. I had ultra sound, a CT scan and blood tests to diagnose this lottery winning disease. I have extremely high cholesterol levels, severe itching, depression and confusion, now weight loss is the latest addition. Fatigue is something you get used to, I tend to sleep a lot and work as much as I can, I take Crestor, Cipramil, Ursofalk, and calcium tabs daily. (Yes, I have severe osteoporosis.) Primary biliary cirrhosis is a nuisance of a disease, but I tend to just get on with it.

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Comment from: LisaDLCT, 45-54 Female (Patient) Published: May 14

I am a young 51 year old female who was just diagnosed with PBC/ stage 1. I have no symptoms right now and am grateful for that. I'm in utter shock and scared. I have a 9 year old son. I started 1000 mgs of URSO a week ago. I am staying as positive as possible and now see life through a new lense. It's important to be connected to a great medical team and with a doctor who sees many patients w PBC- not just a few. We need to stay on top of research for this disease. Stay strong, be positive and be grateful for every day.

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Comment from: Beckybeckola, 35-44 Female (Patient) Published: April 18

I had been working with my primary doctor on and off for a year before being diagnosed. I noticed that I was getting colds more often and longer, and was generally sicker. My energy was waning. We thought it was depression due to stress and other things like that. Because I had bumps on my legs and arms, we thought the itching was dermatological or allergies. I then got food poisoning, which led to a barrage of tests. I had super elevated LTE and cholesterol. I was finally diagnosed by a gastroenterologist and hematolgist as having primary biliary cirrhosis. A biopsy also showed auto-immune hepatitis.

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