Patient Comments: Primary Biliary Cirrhosis - Experience

Question:

Please share your experience with PBC. Submit Your Comment

Comment from: Worriedmum, 45-54 Female (Caregiver) Published: January 29

My daughter is in her 40s and has PBC (primary biliary cirrhosis). She had her gallbladder out at 21 but it took 2 years for them to believe how much pain she was in. The stones were translucent. Wondering if, because she was not treated sooner, the overflow of bile could cause the start of this disease. She has been told she will need a liver transplantation in 8 years. They put a stent in the main bile duct. Wonder if anyone else had this diagnosis.

Comment from: kentster, 45-54 Male (Patient) Published: April 17

I was diagnosed with primary biliary cholangitis (PBC) a year ago after recovering from lung cancer and 4 back surgeries. It explains a lot of symptoms I have, especially being tired. I had the itching a couple years ago, doctors called it dermatographic urticaria or something. I learned not to scratch. I really like the doctor I got now. She makes me feel confident about a long life after reading all the bad stuff. I am 49 and well.

Comment from: TomK., 45-54 Male (Patient) Published: March 05

I was diagnosed with PBC (primary biliary cholangitis) ten years ago. My doctor ran the test trying to figure out why my liver enzyme levels were high. He didn't seem to believe me when I told him I drank very moderately. I learned there was no treatment but hey, I had a diagnosis. To lose weight I went on a juice diet juicing a lot of vegetables. About six months later my enzyme levels were normal and another PBC test came back negative. Juicing vegetables (too many carrots!) was the only change I'd made in my life.

Comment from: Mg, 65-74 Male (Patient) Published: October 02

I apparently have had PBC (primary biliary cholangitis) for years so much so that I now have mitochondrial antibodies in my blood and levels of ammonia. I am being told I am stage 4. I have very few symptoms short of some abdominal swelling and itchiness on one toe but the blood work was a wakeup call. I had hepatocellular carcinoma 3 years ago and am cancer free; they solved the symptom not the underlying problem. My doctor is putting me on medicines this week I don't know what to expect. I apparently do have cirrhosis and I don't even drink.

Comment from: Mary, 35-44 Female (Patient) Published: August 01

I was 19 and pregnant when my symptoms of primary biliary cirrhosis (PBC) first started. After giving birth, the outward symptoms stopped (jaundice and itching). But blood work for liver function tests were still off the charts. I was referred to a specialist. I was diagnosed with PBC with negative AMA. She prescribed ursodiol 500 mg 3 times a day. After a few months, my liver function tests (LFT) were within normal range. I am now 44, doing well and still on medication (I have gone off the medicines in the past, and LFTs elevated again).

Comment from: Jackie, 65-74 Female (Patient) Published: July 17

I have just been diagnosed with PBC (primary biliary cholangitis). I was putting symptoms like itching, lethargy, and bruising down to age (70), but was referred to a hospital due to raised liver function tests. To say I was shocked was an understatement but since reading of the condition I feel better. Luckily I don't drink so won't miss it. I have been prescribed ursodeoxycholic acid 300 mg 3 times daily. Next hospital appointment is in October. I know this is not a cure but hoping medicines will be reduced. Hate taking medication but will persevere.

Comment from: Stephanie, 35-44 Female (Patient) Published: February 22

This information needs to be updated; and thanks to the PBC (primary biliary cholangitis) patients who shared their stories. This illness is one that gets very little recognition and support and seems to be very misunderstood. The life expectancy presented here is entirely wrong. PBC patients have normal life expectancy, as well as needing monitoring, medication, and lifestyle changes. Stop scaring people and report responsible information. I was diagnosed with severe symptoms twelve years ago, and now I am in good health with no symptoms whatsoever to speak of. The most dangerous part of this illness is how needlessly pessimistic doctors are. What PBC patients need is a support system that understands the fatigue portion, and regular blood monitoring.

Comment from: Jill, 45-54 Female (Patient) Published: December 14

My liver enzymes were elevated when I was 19 years old. After suffering with abdominal pain on and off for 8 years, I became pregnant and all symptoms disappeared. Before delivery I experienced severe itching especially at night to the point I could not sleep. After delivery 3 weeks early, all the attacks that I would have had during my pregnancy occurred in a short period of time with a vengeance. I was vomiting bile with alkaline phosphatase over 999. I had my gallbladder removed and liver biopsied confirming PBC (primary biliary cholangitis) at age 28. I was hospitalized for a week with infection until my main bile duct was widened. I am now 53 and have been on 250 mg 4 times per day for many years. I've since had Graves' disease which quickly (1.5 years) went into remission with a high dose of methimazole that I was weaned off. My only symptom now is occasional itching that at times becomes constant and severe. I do a lot of self-research and take supplements, eat relatively healthy and exercise 2 hours almost daily. I eat very little meat and a lot of fish. After recent research I am considering doing a 10 day annual fast. Scared, but I think it would be a good course of action. Especially considering I have had chronic muscular problems which I'm told are autoimmune in nature. Fasting has been proven to be a very effective treatment for several diseases, especially rheumatism and autoimmune conditions. Well, guess I beat the 16 year survival being that I've had PBC for 36 years now.

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Comment from: Lisabug, 55-64 Female (Patient) Published: February 19

My PBC (primary biliary cirrhosis) diagnosis was one year ago. It was discovered through blood work, looking for something else. I was referred to a liver specialist and am taking 1500 MG Ursodiol daily. Last lab tests were extremely good and I have very few symptoms other than some bloating occasionally. I have found losing weight, eating better and cutting out the sugars have been extremely helpful in controlling this disease.

Comment from: teacher, 75 or over Female (Patient) Published: December 23

Twenty-five years ago, I was diagnosed with early stage PBC (primary biliary cirrhosis), identified through a blood test for something else. I had slight symptoms, sweats and slight itching, but didn't recognize it as something to worry about. With the PBC diagnosis, I realized it was related. I have been taking Ursodiol (900 mg) every day. I had follow-up biopsy 7 years ago. Test showed the disease hasn't progressed. My energy is high, no itching or sweating. Life is good!

Comment from: Kath, 65-74 Female (Patient) Published: November 14

I have had a primary biliary cirrhosis diagnosis (PBC) for 15 years, and although I have high cholesterol and osteoporosis, I have good general health. Recently I have required iron infusions, but this hasn't been diagnosed with a cause, although I have had extensive testing. I take ursodeoxycholic 500 mg twice daily and every night. I just wanted to say there is a good life following diagnosis.

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