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Primary Biliary Cholangitis (PBC)

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How was your case of PBC diagnosed? Submit Your Comment

Comment from: Sherry, 45-54 Female (Patient) Published: November 25

I started dropping weight 10 lb. at a time over the course of a couple of years. As I have always struggled with my weight I went to my doctor and told him something is wrong. He said I look great but let's run some blood tests, and all was normal. At 48 years old I had a severe kidney infection and that is the first time we saw elevated liver enzymes. In a year, levels had quadrupled. Ultrasound was normal. AMA (anti-mitochondrial antibodies) was very high. While waiting for final diagnosis, found myself in atrial fibrillation. Gastrointestinal doctor said PBS (primary biliary cholangitis) cannot cause heart problems; but apparently AMA can. I was told I was a “conundrum” and sent to specialist after specialist. Now at 51, I have a pace-maker/ICD (implantable cardioverter defibrillator), take Urso 300 mg a day along with heart medicines and a host of supplements. Liver enzymes are staying pretty normal, fatigue is kicking me. Leg weakness is very scary. I have been assessed for heart transplant, which they think I'll need before the liver. Currently I am not working and not sure if I will try to go back. I am a registered nurse. Last week I was told I also have Sjogren's now and started immune suppression medications. So scared and my husband just says “don't worry, everything will be fine,” at least now I know how not alone I am. I wish you all the best. I wrote because I didn't see anyone mention heart problems. So if you are one of those rare ones you are not alone.

Comment from: Pam372, 45-54 Female (Patient) Published: November 13

I am a 45 year old woman and I have had 2 liver biopsies and they both are inconclusive. I am between autoimmune hepatitis and primary biliary cholangitis (PBC), with doctors leaning more towards PBC. I started seeing a liver specialist about a year ago. It just seems that no one has ever dealt with PBC in my area, which is frustrating. I am being treated for PBC with 1200 mg of Urso a day. After reading through these comments, it seems that we all have the same thing going on. I see there are stages and I am unsure of where I am. I am still somewhat new to this, but tried to get a life insurance policy in 2010 and it showed elevated enzymes. As of 10/27/17, my ALT was 108 (9/20/17 - 210), AST 113 (was 241), and alkaline phosphatase was 356 (compared to 567 in September). I have massive itching episodes right now. I have tried 4 of the 5 medicines for itching and it seems that nothing is working. I'm to the point to where I want to just take all my skin off. Fatigue is just another paragraph on its own. Basically the same as everyone else.

Comment from: Terri, 55-64 Female (Patient) Published: June 24

I was diagnosed with primary biliary cirrhosis (PBC) in 2012 at age 57 when I had my gall bladder removed. Biopsy showed scarring not PBC. Eight months later my primary care physician (PCP) had an ultrasound and it showed cirrhosis. In 8 months, wow! I have bad itching to my head, arms and legs. PCP referred me to a specialist and said for me not to worry. I would probably live for 20 years. I do monthly blood work and am taking vitamin D and hope for the best.

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.

Comment from: shelly haddon, 45-54 Male (Caregiver) Published: August 01

I was diagnosed as primary biliary cirrhosis (PBC) carrier after tests were done to investigate my immune system. I had PBC of the liver already present. I started treatment with ursodeoxycholic acid (UDCA), ursodiol (Actigall, Urso), obeticholic acid (Ocaliva), and fibrates (Tricor) which reduced the viral load initially.

Comment from: pauline, 55-64 Female (Patient) Published: October 31

I was diagnosed three years ago due to swelling on knee.

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.

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.

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.

Comment from: Mrsswannie, 35-44 Female (Patient) Published: March 08

I am 39 years old and was just diagnosed with Primary Biliary Cirrhosis in Feb. 2012. It all started over a year ago when I had my appendix removed. Blood work showed that my liver enzymes were slightly elevated so my Dr. kept an eye on that. Last fall she referred me to a specialist. He sent me for more blood work to check my AMA. That test came back positive. He then sent me for a liver biopsy to confirm his diagnosis of PBC and to see what stage it was at. The results came back positive and showed that the disease was at the very beginning stages, for which I am very thankful. I take 1500mg of ursodiol a day with food. I sometimes get cramps but that is all from the medication. I do not have many symptoms yet, just pain and soreness on my right side. The specialist encouraged me to lose weight and eat healthy and to get daily exercise. I do need to lose 40 lbs to get to the ideal weight for my height so that is high on my priority list. It is going well so far. I am very thankful to God that this has been discovered early. I am resting in Him that I will have many years to enjoy my husband and 4 kids.

Comment from: Sandy, 45-54 Female (Patient) Published: November 21

My doctors thought at first it was gall bladder so they removed it and during surgery did biopsy of my liver with diagnosis of PBS now the itching is making me crazy!

Comment from: Lucy58, 45-54 Female (Patient) Published: October 11

I am a 53 year old female diagnosed with PBC 8 years ago. Liver enzymes were high and unaffected by diet. Liver biopsy showed PBC but asked my GP to run the antibody test to confront my denial. Results dispensed with denial. I am prescribed 750 mgs of urso twice a day but I don't always eat two meals a day and so only take the drug when I eat to avoid diarrhea. I am having my gallbladder removed next week due to pain from gallstones. I have some itching. I am tired. But...my liver panel, with the exception of the alk phos, is normal since the URSO. Cholesterol is very high (crestor every other day to get some control of that) and triglycerides are ridiculous. But, I thank God for the URSO and my wonderful gastroenterologist. My daughter is 14 and I plan to live to spoil her children. Life is good.

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

My diagnosis came when I was approximately 40. I have always had high cholesterol numbers, and was suggested a number of diets. My doctor 13 years ago decided to test for primary biliary cirrhosis and bingo I have it. I began going to a Gastroenterologist and started on Urisiodial. I have been taking it in increasing amounts since. I have no medical proof but, I believe my mother had PBC. She had a swollen, distended belly, yellow eyes, yellow skin and poor breathing. My sister was recently diagnosed. Urisiodial was tried but, is of no use. She is jaundice (eyes and skin), great loss of body strength and body mass. She is awaiting a liver transplant.

Comment from: O''liver, 55-64 Female (Patient) Published: May 16

I have been living with primary biliary cirrhosis for more than 15 years. A liver biopsy confirmed it. I have never known anyone with it. I have had symptoms since my early 20s. I spent one year with joints that were so swollen we had to pay someone to help me take care of my children. My skin always had rashes, terrible itching, allergies, and asthma. I was told I had rheumatoid arthritis. As of today, I do not test positive for it. The depression is bad. You are always in pain. I also have had Raynaud's phenomenon since my early 20s.

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Comment from: Nana's boys, 55-64 Female (Patient) Published: August 08

I was diagnosed with Pbc at 38 yrs old. My main symptom is fatigue and now that I have retired I realize it was more exhaustion than fatigue. I was too stubborn to take any time off my management job. I also had severe itching which has now subsided. I function very well during the day but do get tired in the early evening. I have been diagnosed with osteoporosis and do take calcium and vitamin D. I have severe dry eyes and use drops and gel regularly. I now have ultra sounds every 6 months to check for cancer of the liver. I have learned over the past 20yrs to listen to my body and am able to manage very successfully. Very few people even know I have this very serious disease. I exercise daily, eat balanced meals and try to maintain an ideal weight. I am always reading any information I can to keep up with developments on PBC. I have been taking urso since first diagnosed. Other than Urso, calcium & vitamin d I do not take any medication- not even aspirin or anything like that. I feel thankful for the health I do have.

Comment from: marshar, 45-54 Female (Patient) Published: April 05

I am a 50-year-old female. In late 2010, I had a gallstone attack, but it was small and passed. By 2012, my gallbladder was filled with stones, and in April of that year I had a laparoscopic cholecystectomy. Unfortunately, the surgeon was not on his best and missed a stone. Two weeks later I was insanely itchy, jaundiced, and exhausted. I was referred to a gastroenterologist, who removed the stone by scope, and everyone said the jaundice and itch would recede within a few days. But they only got worse. The gastroenterologist stated that he did a thorough check when he did the scope, and found no lesions, polyps, cancer, etc. My blood work was all over the place. I was treated with hydroxyzine, ursodiol, and Rofact, but the itch, jaundice, and exhaustion did not go away until the end of June. They also did a liver biopsy, and in late August I was diagnosed with primary biliary cirrhosis. Looking back, I realize now the gallstones were a symptom. As was the hypothyroidism I have had since puberty, along with the darkened skin patches along my jawline. I am currently taking ursodiol, seeing a naturopath, and following a strict vitamin regime. I'm waiting to see the local liver clinic in a few months.

Comment from: Emily, 65-74 Female (Patient) Published: April 05

I am a 73-year-old woman diagnosed with cirrhosis about 10 years ago. Since about age 12, I've had various illnesses that I believe have damaged my liver. I was diagnosed during a regular blood test, which showed elevated cholesterol and liver function. This was followed by a biopsy which confirmed PBC. I have been on Ursofalk for about four years, following an infection and rapid rise in liver readings. Although I realize that no evidence of the disease has been found in children, I was wondering if this is simply because they are not generally subjected to regular blood tests as are those who are aging. From my experience, there were signs in my childhood and young adulthood indicative of liver disease.

Comment from: Blue, 65-74 Male (Patient) Published: March 20

I was diagnosed with PBC in 1992 and suffered all the symptoms. Urso-25- was the best medication for me. I had a liver transplant in 2000 and it lasted 11 years. I had another transplant in 2011. During 2009 and 2010 I had all the PBC symptoms again. Receiving a liver transplant is a gift of God. Don't give up.

Comment from: 25-34 Female (Patient) Published: February 04

I am a female of 34 years. I was diagnosed with liver problems after my second child was born. He is now 8. I was diagnosed with primary biliary cirrhosis when my portal vein burst a few years ago. I always have itching of the skin. My legs and back have many spider veins popping up and my skin color is darkening as the days go by.

Comment from: reddress, 13-18 Female (Caregiver) Published: July 06

My daughter is just 13 years old. Her PBC was diagnosed when she went to a new pediatrician because she was having chest pains and her abdomen was swollen. She had itchy skin, waxing and waning jaundice, bone pain an extremely enlarged spleen and liver and what looked like a rash. After extensive testing and finally a liver biopsy, the diagnosis was confirmed. This is extremely rare in children and she now requires a full liver transplant.

Comment from: redgirl, Female Published: April 05

At 51, I was given a clinical diagnosis of PBC. A routine blood test showed elevated liver counts. Further blood tests showed elevated liver functions. The liver biopsy showed some abnormalities, but inconclusive to give a positive PBC diagnosis. It has been 5 years. I still feel healthy. I exercise regularly, and live a full life. It is hard to take the whole thing seriously under the circumstances.

Comment from: Betbryn, 55-64 Female (Patient) Published: January 19

I was diagnosed with PBC in February of 2009. It has taken me quite a while to get my head around and to accept that I have this horrible condition. I am 64 years old - still active and working part-time - and being a farmer's wife having to cook and look after two grown men. I have very good days and some not so good. I find myself not feeling too good for the first hour or so in the mornings. I get bouts of fatigue and just a little bit of itching from time to time. I take three Ursos a day {250} and I am sure they help. A little bit of depression sets in some days when I'm feeling negative. The magazines from the PBC Society always put me in a positive mood - God bless the editor and staff.

Comment from: :NCson, 65-74 Female (Patient) Published: February 25

My PBC was diagnosed during my yearly physical and blood work. An ultrasound, a multitude of blood tests and a liver biopsy as well as two CAT scans confirmed I have an overlap of PBC and immune hepatitis. I have a great doctor and he is following up with all the tests needed, and I feel great.

Comment from: Mimi, 45-54 Female (Patient) Published: January 18

My primary biliary cirrhosis was diagnosed through routine blood tests and a liver biopsy.

Comment from: DeAnne, 45-54 Female (Patient) Published: May 09

I am a 46 year old female. I was diagnosed a year and a half ago. My doctor was watching my liver function for about 2 years, and then sent me for a liver biopsy. I had pbc. It was then confirmed by a blood test. I take 500 mg of unsocial twice a day. My liver function is now normal.

Comment from: LDM1960, 45-54 Female (Patient) Published: April 18

I am a 51 year old female, who has never had health issues. A routine blood work up showed high liver enzymes. Further blood work showed I had Lyme Disease. I was treated for that for three weeks with antibiotics. Aside from fatigue, I had no serious symptoms. My levels began to go down, but my doctor referred me to a gastroenterologist. That turned into further blood work, and a liver biopsy. Today I was told I have primary biliary cirrhosis. I am in utter shock and scared. My Doctor totally frightened me by saying I may need a liver transplant.

Comment from: katw, 45-54 Female (Patient) Published: March 15

I had a c scan on my lungs after shortness of breath, flu like symptoms. (early 2011) Was told I needed to have follow up on my liver because it looked large and swollen. Blood labs, more scans and then biopsy confirmed I have stage 1 PBC. I have lots of joint pain, exhaustion, and itching. I am on Actigall 900 mg daily, Also Cymbalta for depression.

Comment from: halo, 35-44 Female (Patient) Published: January 27

I am so glad I found this site it is hard talking to people about this disease when they have no idea what you are going through. The worst part for me is the pain. Hard to get going in the mourning's that is when it is the worst. I'm 37 and was just diagnosed 2 months ago still find it hard to believe I have this. Good luck to all of you and god bless.

Comment from: Tracy from Ontario, 45-54 Female (Patient) Published: June 22

I was diagnosed with primary biliary cirrhosis (PBC) 8 years ago after I had my gallbladder removed as stones were suspected for severe abdominal pain. My liver enzymes were still high so a biopsy was performed. I have been taking 750 mg Urso daily and until recently experienced no symptoms. The last year I have had rheumatoid arthristis symptoms with no definite diagnosis. My immune system is wreaking havoc with my body. Recently I have been experiencing moderate itching mainly legs and arms. I am worried that the itching will get unbearable.

Comment from: WandaH, 45-54 Female (Patient) Published: June 03

Went to my GP in mid-March 2011 for bronchitis. Told him I'd been losing weight and had a bad taste in my mouth for several months. Consequently, blood work was done. The nurse called me the next day saying that my liver panels were high. Scheduled me for an abdominal ultrasound the following day and then back to the doctor that afternoon for results. Scary, them moving me through so fast! Had my gallbladder out on March 31, 2011. A month and a half later (mid-May 2011), liver panels were still high, so I went to a gastro. Did more blood work. Doctor called me with results last week at night confirming primary biliary cirrhosis (PBS). You know it's serious when the doctor himself calls you AT NIGHT!?!? Started meds the very next day. Still unsure about all of this....and scared.... Never had any health issues prior to this.

Comment from: Uli, 45-54 Female (Patient) Published: June 01

I have had chronic fatigue syndrome diagnosed in 2007. After 13 months seemed so much better. Contracted flu in 2011 and reactivated cfs and hit menopause. Had routine blood tests which indicated Ana and AMA serology etc was positive. A new really smart gp picked it up and did further testing. My sister also has PBS and has had for 10 years. She is on cortisone etc. I have also had blasto cystis hominis, helicabactor, clostridium difficlile and 2nd line treatment for all with millions of antibiotics - not good for the liver. I will now really watch everything that goes in my mouth and no alcohol.

Published: June 01

I was diagnosed with PBC this past Thursday. I originally went to my primary doctor because I was having indigestion, heart burn and pain in my left jaw. I was thinking heart disease. Dr. ordered a blood workup but referred me to a cardiologist immediately. When he received my blood results, the liver enzymes were elevated so he sent me to a GI specialists. After more tests, ultrasound, PBC is the conclusion. I will be having a follow-up to determine if a biopsy is to be done to determine stage and treatment. I have no symptoms other than those above except that I now notice tenderness around my liver (in my head?). I must say that I'm in a bit of shock right now as I research this disease but am hopeful that we caught early and keep it in check. I have a physical and blood work done annually and everything has been perfect up to now. Wow...life changes quickly.

Comment from: lendiwarden, 55-64 Female (Patient) Published: April 11

I had breast cancer in 1999 and a series of other health problems. In 2003, after routine exams, they found I had gall stones and when having the surgery for that looked around and the surgeon noticed that my liver didn't 'look' right. After the surgery and the doctors thought it was hepatitis. Further testing confirmed I had PBC.

Comment from: dd, 55-64 Female (Patient) Published: April 11

My PBC was diagnosed after a blood test revealed very high levels for all my liver enzyme levels. This followed a 5-year period of being on Hormone replacement therapy from age 50-55.

Comment from: bunno1, 55-64 Female (Patient) Published: March 16

I'm a 59 year old female. About 7 years ago my liver enzymes showed elevated during routine annual blood tests. I have been being screened for primary biliary cirrhosis (PBC) once per year since then. I was finally diagnosed this year after the annual AMA test came back positive and a liver biopsy indicatd markers consistent with PBC. My mom was diagnosed with PBC in the early 1970's when they knew little about the disease. She became a subject of research through the University of Chicago Hospitals until she passed away in 1982 from liver failure. I have no significant symptoms other than itching at the very top of my left rib cage in front. I've had the itching for about 3 years and it intensified about 6 months ago. However, I've been on Urso for 2 months now and the itching has all but stopped this week fo the first time. My doctor said he has about 6 other female patients with PBC. He believes with diet, excercise and Urso, it is entirely possible for one to live a full and normal lifespan.

Comment from: Cathy, 55-64 Female (Patient) Published: January 25

My alkaline phosphates have been elevated for the last 12 months. After having an ultrasound and then a liver biopsy, I have been told I have PBC and will be starting URSO in a few days, 250 mg 3 times daily, I am in early stage 1. The doctor said it was lucky we caught it early. I have had no known symptoms, but I did have veins stripped about 6-8 years ago because 1 leg was 1/2" larger than other. I believe I read somewhere where this is one symptom and have had arthritis for 20 or more years in both knees.

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