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Primary Biliary Cholangitis and Cirrhosis (PBC)

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Please describe the symptoms you experienced with PBC. Submit Your Comment

Comment from: Mother 60, 55-64 Female (Patient) Published: June 12

I was diagnosed with primary biliary cirrhosis (PBC) 28 years ago. Itching was incredible, and I was told I had glandular fever. Having an older brother with this, I had a liver biopsy. I take Ursofalk and sumac. I have portal hypertension which has caused vomiting of blood on a few occasions. Through all this I'm still very well, tired, with brain fog, but I find if I drink lots of water this is much better and I have more energy. I'm not overweight and watch what I eat. I have regular ultrasounds, still have all my other organs, some depression sometimes. I am lucky enough to live in a country with universal healthcare so everything is free. Ursodiol is better than Actigall, and I can get 100 tablets for 6 dollars. For the people fearing transplant, my brother had a transplant 18 months ago, he was near death and only 60. He is now back to his old self again, very healthy and happy. I get glued and stalled internally to stop the bleeding and fly around the world frequently. Symptoms differ; except for the tiredness.

Comment from: Kate, 65-74 Female (Patient) Published: August 04

I was 44 when I was diagnosed with PBC (primary biliary cholangitis), asymptomatic stage 1. Early indication of PBC was slightly elevated liver enzymes, mostly alkaline phosphatase. It took a while to get a definitive diagnosis since AMA testing was not readily available back then and we had to send samples out for analysis. Following ERCP, ultrasounds, biopsies, MRI cholangiogram, etc., most of which were repeated at the hospital, I was finally diagnosed. Itching started within about a year, followed by extreme fatigue, insomnia, and Sjogren's syndrome. My PBC progressed rapidly and within 3 years, I was listed for a transplant. I had transplant in 2000. All symptoms disappeared immediately; jaundice, itching, fatigue, etc. So now I'm 67, healthy and grateful.

Comment from: sherry, 55-64 Female (Patient) Published: November 13

I have just been diagnosed with PBC (primary biliary cirrhosis). My problems started with an initial diagnosis of diverticulitis. I had extreme pain in the right side, but also pain in my back on both sides. The first round of antibiotics didn't work so I got a second round, then a third. Then they did a colonoscopy which confirmed the diverticulitis. I still had pain and diarrhea that went on for 3 months and they finally did a stool sample which showed that I had Clostridium difficile. After 14 days of Flagyl, I finally started feeling better. I lost 20 lb. rapidly during this time and am still losing. Blood tests showed abnormal liver enzymes and kidney levels. I had bloodwork every month with the last time being extensive and showed the PBC. I'm taking ursodiol 500 mg twice a day. Most recently I had a bladder infection 2 weeks ago and just called the doctor because I have another one. I only have one kidney so I am very concerned that the treatment of the PBC may cause damage to my kidney.

Comment from: breekins, 25-34 Female (Patient) Published: July 28

I am a 34 year old female diagnosed with primary biliary cirrhosis (PBC) after a few years of elevated liver enzymes. When I was diagnosed I was immediately sent for a liver biopsy which classified it as stage 4 with autoimmune hepatitis. I had yellow skin and eyes, liver pain, extremely fast weight loss, malnourishment, fatigue, and itch at diagnosis. I started Urso 500 mg 3 times a day which we have found out I am not responding to, so I also take 50 mg of prednisone (steroid for inflammation) to slow down progression. Since starting steroids skin and eye color have gotten better and liver enzymes have dropped but still have the fatigue, itch, weight loss, and nausea. I understand that this is supposed to be a slow progressing disease but not in everyone. Mine unfortunately progressed to stage 4 fast. I wish I was one of these that would die with it than from it but unfortunately for me mine progressed really fast and I am at the point where my only option is a transplant.

Comment from: PBC patient, 55-64 Female (Patient) Published: October 18

I was diagnosed with primary biliary cirrhosis (PBC) in 2010 at age 59. I am taking ursodiol 250mg. Symptoms: mild pain under rib on right side, ALP, ALT, AST are mild to medium elevations from normal . High cholesterol. Often tired. Often feel sleepy. I need to rest and sleep more than I used to. Itchy on arms, lower parts of legs. I'm now 62. Urso helps keeping my liver enzymes in normal ranges. Had 1 biopsy that confirmed the PBC. Had ultrasound tests, CTs and MRIs since the diagnosis, and the tests show a very slow progress of the disease since 2010, almost unchanged. I am still working full time.

Comment from: marykay, 55-64 Female (Patient) Published: February 20

Symptom of my primary biliary cirrhosis is, I have little red spots developing on my body, they look like little bug bites.

Comment from: chrsgonz1, Female (Patient) Published: August 12

I am a 38 year old female. I found out that I have PBC about 3 years ago. I have had 2 liver Biopsys and several blood tests. I was told 3 years ago that I was at stage 1 maybe 2. My father has passed away from Hepatitis non A non B. Not sure what that means or if it has anything to do with me now? I have noticed that lately that I am more tired and confused. I feel like I am pushing myself to maintain a normal life. My energy is gone so early in the day now. The confusion is now noticed by family members. I am scared and I do not know anyone with this disease. So, I tend to feel very alone and not understood about the changes I am going through. My family does and will not talk about this disease. I keep going to your site to read and understand and if there are any new answers.

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Comment from: Dord, 65-74 Female (Patient) Published: August 12

I was diagnosed in New Zealand after a first asthma attack at 58 years of age. Blood tests indicated a live abnormality and the diagnosis was confirmed by biopsy. I was having unexplained hypoglycemia on exercise before diagnosis. I have frequent petechiae on the forearms and have episodes of Raynaud's Syndrome (very painful but no long term effects). I struggled a bit with depression at times. I had my gallbladder removed at 40-ish and have a bile reflux controlled with a minimum does of Questran before bedtime. Actigall and Vit D have also kept me well. I watch my weight and exercise daily to help avoid the dreaded transplant. Over the last year I have had an increasingly dry mouth which is listed on this site as associated with PBC. Mainly I am well and (after waiting to die for a year or two!) resumed my career in health management and remain semi-employed (by choice) at 68.

Comment from: acasey135, 55-64 Female (Patient) Published: July 08

My diagnosis was preceded by complaints of being tired all the time and having high cholesterol levels, for which I was prescribed Crestor. However, after one year and two blood tests, my liver enzymes were skyrocketing. My primary care doctor referred to me to a gastroenterologist because I was also having gallbladder troubles (no pain, but vomiting). A scan confirmed that the gallbladder was not working better than a 12% rate, so it was scheduled for removal. Meanwhile, the enzyme tests continued at very high numbers (triple normal) even though I'd now been off the Crestor for more than six months. I was told I had primary biliary cirrhosis (PBC) and was prescribed Urso Forte (2 times, 500 mg, daily). The gallbladder surgery came along, and I asked for a liver biopsy. (They were in the area so why not?) It confirmed me as stage 3 PBC. My main symptoms are exhaustion, which I no longer feel ashamed about, and itching. Lately I think my stomach area is swelling on and off during the day, and I'm noticing that my feet swell a lot (similar to when I was pregnant over a hot summer). At night, they seem to want to be soaking in a cool tub of water.

Comment from: missraven, 35-44 Female (Patient) Published: June 05

I was recently diagnosed with PBC. I am now 40 I have had elevated liver enzymes since I was at least 29 when I had my gallbladder removed. I am overweight so I have been diagnosed with everything from fatty liver which I do not have to the fact that I must drink heavily which I do not. I had an elevated CA125 level that was found during fertility treatments which failed. Now I know this was because of the PBC. They took my ovaries because of this elevated level thinking I had ovarian cancer, I did not. The itching to my legs is horrible at night I am on ursodiol and my enzymes are normal, but my bilirubin is 3.3. It has not helped the itching at all and I am still very fatigued. Stay depressed a lot due to what this is doing to me and to my husband. I have stage 4 but do not qualify for a transplant because my INR and BUN are normal.

Comment from: julie, 45-54 Female (Patient) Published: May 20

I have primary biliary cirrhosis. I was diagnosed at 40, I'm now 48. I think I had this illness around age 36. I had yellow eyes then, and bloating. I have more of the bloating now, which is bad. I also had my gallbladder removed at 26. My symptoms get me down. I'm tired all the time, which make me very tearful. My cholesterol is high, I have mental slowness, which I am sure is because of the illness. I tend to forget things. I'm glad I don't itch anymore. Maybe it's the Urso I'm on. I now have red veins on my face, and cholesterol lumps on the side of my eyes. It keeps me from going out much.

Comment from: Mom, 25-34 Female (Caregiver) Published: May 07

My daughter started itching uncontrollably her junior year of college. She was 20 years old. She was hospitalized for over 10 days and her skin was orange. She was dying. Finally the doctors tried Actigall and she got better, but she missed an entire semester of school. Then, ten years later, her symptoms reappeared during pregnancy, and the baby had to be delivered at 7 months. Now, a year and a half later, she has developed symptoms again, for no apparent reason. I am one terrified mom. It does appear that we have found a doctor who may finally diagnose her correctly. We don't have a PBC diagnosis yet, but her symptoms are exactly as stated here. She is scheduled for a liver ultrasound tomorrow, with a biopsy in the near future.

Comment from: Boyd, 55-64 Male (Patient) Published: April 08

The initial diagnosis was Hepatitis B. Later, a liver biopsy confirmed primary biliary cirrhosis. I now take 1,000 mg of Urso and a daily multivitamin. After 18 months on these, I have gained 10 pounds, and the itching and fatigue are less frequent. The Urso seems to work well for me. I am a 64-year-old male whose mom was diagnosed with PBC in her 50s.

Comment from: Hopeless, 35-44 Female (Patient) Published: February 20

I was recently diagnosed with primary biliary cirrhosis (PBC) and was devastated. I had two elevated liver enzymes and this went on for one year. An ultrasound showed two enlarged lymph glands under my liver; however, my liver was not enlarged. My liver function tests are all normal. My biopsy was performed two weeks after my blood work. I am on Urisol but do not feel any different than I did before the diagnosis. I don't really notice symptoms except I do get fatigued and then sleep well. I do notice I need eight hours of sleep at night. Also, when I get tired, my eyes get itchy. I did not know this was a symptom. I thought it was my age. (I'm 44 years old.) I am busy with three kids in sports, and my neighbors say I come and go so often that they don't know how I do it. So, I figured being tired is a normal part of my life. I have taken Urisol for four weeks now, and I hope for the best. I worry about this condition at times, but it is mainly the unknown future this disease will cause. I guess I am scared.

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Comment from: Lauralee, 55-64 Female (Patient) Published: September 12

I have been diagnosed with Sjögren' Syndrome, Fibromyalgia, and Osteoarthritis. In reading this article and the comments by others I realize that my hematologist has been talking about PBC. I have had 3 liver biopsies done due to my high liver function panels. I have also experienced severe, debilitating pain which put me in hospital for 10 days. I suffer with the dry eyes, dry mouth, itching legs and feet. My legs are never still until I fall asleep. I use eye drops in the day and an eye gel at night, but my eye specialist closed my tear ducts with a laser procedure. One of my biggest fears is choking to death, I find that I don't have enough saliva to push my food down, so I have to make sure I have a drink close at hand. I have suffered with these problems since I was in my twenties, but was only diagnosed this February at age 60. I do find that the Hydro chloroquine and Lyrica relieve some pain for me. I am pure Anglo Saxon, my family is English on both sides and the study done in England makes me wonder if it is more prevalent in Anglo Saxon's over other races? Good Luck and God Bless to each of you who suffer with these awful diseases.

Comment from: Pattyc0527, 45-54 Female (Patient) Published: August 20

Have had active PBC for 8yrs, but took 7 of those years for the diagnosis. I had to remove my gallbladder 1 year ago due to gallstones caused by PBC. Have no production of natural tears or saliva. I have trouble swallowing, constant itching of arms, legs and back, chronic fatigue, enlarged liver, constant liver pain and compromised immune system. Also PBC has raised my cholesterol levels. I have diarrhea 4-5 days a week with if lucky 5mins to get to bathroom. I know I will develop additional problems. I use eye drops to try to prevent eye ulcers and take Erisiol. To try to slow down liver destruction.

Comment from: P, 25-34 Female (Patient) Published: August 13

I have had itching on my hands and feet for several years now, severe fatigue and elevated liver enzymes. My general practitioner assumed these were related to my two pregnancies that I had close together. After this last pregnancy, my liver enzymes failed to come back to normal range as hoped and my ALK PHOS climbed from 130 to 245 then to 637 the following month. I was seeing a specialist for other issues and he picked up on this and ran the AMA panel. I have the liver biopsy this week to stage it. I am unsure of how long my primary biliary cirrhosis has been present, as I have had these symptoms for a few years now. Also, uncharacteristically, I don't fall into the common age group of diagnosis. I am 29.

Comment from: DiannB, 55-64 Female (Patient) Published: July 02

At about 55 they removed my appendix and then 6 months later removed my gall bladder (after testing said that it was not working at all). About a year ago I developed diarrhea, They tried antibiotic, and many different treatments for IBS while they were testing Blood, Stool and urine samples. Nothing showed up. In December 2012 the doctor decided to put a stent in at the duct of the pancreas (about 4 years ago he removed a blockage there). This caused acute pancreatic because the stent moved into the pancreas and attached to the wall of the pancreas. This caused fluid to build in my left lung which was drained but did not clear up the cough. I ended up back in surgery again to remove the inflammation and glue the lining of the lung to the lung to prevent the fluid from building again. None of this corrected the original problem with diarrhea. The same doctor started doing the same test all over again and again came up with nothing. Finally in April I started seeing a different digestive specialist who started running different test and finally showed I have an auto-immune disorder which has pointed to PBS. I am always tired and can hardly make it 4 hours a day before I am tired and drained. I am depressed because I can do what I want anymore and it is also taking a toll on my husband being able to do things he likes to do because he is spending time with me. He retired 4 years ago and this is suppose to be our golden years where we could get out and travel and enjoy life and each other and now I am held back with this. Yes I am depressed.

Comment from: debbie, 55-64 Female (Patient) Published: June 10

I am a 58 year old female and I was diagnosed with stage 4 PBC, but first my story starts with going to dr. for pain in hip and back, she gave me an anti inflammatory called dyclofinac, in two weeks i was peeing brown, 4 weeks i turned yellow, dr. tested me for hepatitis 3 times, all were neg. so they were getting ready to take out my gallblader, when they decided to send me to a gastrologist, my bilirubin was 19 something i don't remember, anyway i was in hospital a week trying to get my liver to turn around. Biopsy said no cirrhosis, sent me home, yellow for 6 months giving blood every week to keep an eye on bilirubin, i had an allergic reaction to the meds and 8 months later i had second biopsy which showed stage 4 PBC with extremely scarred liver. Now 2 years later I'm still having new symptoms all the time that make my life miserable.

Comment from: pam, 55-64 Female (Patient) Published: April 26

My PBC was noticed during a blood test for life insurance in 2001. In 2002 I had a biopsy that confirmed PBC. In 2003, I had my gallbladder removed. Since then, I've had lots of symptoms: itching; weakness; dry mouth, eyes, and skin – you name it. By early 2005 I was put on a transplant list. Since then, I've been taking Urso, prednisone, and anti-rejection drugs. I also have portal hypertension and autoimmune hepatitis. PBC is very life changing, especially with all the drugs I have to take, including propranolol and Nexium. When I thought it could not get worse, in 2007 I came down with spinal stenosis. Now I'm disabled. But I have coped and my family is a big help.

Comment from: daisylady, 55-64 Female (Patient) Published: August 12

I am a 57 year old obese female. I was diagnosed with PBC. My mom was diagnosed in also. I was told I had a fatty liver also after 2nd liver biopsy. My Doctor talked to the radiologist and gave him more info than just the biopsy and he changed it to PBC. I also have itching at times, dry eyes (which I use Sistine). I have hiatal hernia, and gastroparesis. I have GERD also. Plus the usual arthritis and Raynaud's syndrome. I am tired all the time and I do not sleep well. I take 8 x 300mg ursodiol everyday. Right now all my blood work is normal. I take it 1 day at a time.

Comment from: foxy123, 65-74 Female (Patient) Published: May 14

I am 66-year-old female and have primary biliary cirrhosis. This started in my 40s, which is pretty much normal for PBC. I do get very tired. But I exercise at least four times a week at the YMCA. I have had two liver biopsies. The one I had two years ago revealed stage 3. I do not itch as most patients do. However, I do bruise very easily. It seems I keep red marks on my arms all the time from just minor pressure or bumps. I guess I am fortunate to have only these symptoms. However, I really worry about all the complications with the disease.

Comment from: Lonnie, 55-64 Male (Patient) Published: December 16

I was diagnosed nine months ago. My routine blood work indicated I was anemic. A liver biopsy revealed I had primary biliary cirrhosis (PBC).

Comment from: Joanna, 25-34 Female (Patient) Published: December 16

I have been diagnosed with primary biliary cirrhosis (PBC). I am 32 and a mother of 5-year-old twins and an 18 month baby as well. I had severe itching, which is how I was diagnosed after my most recent pregnancy. The doctors think that PBC was directly caused by something in my pregnancy. I have finally experienced relief from the relentless itching through a drug called Vistaril, and my liver levels are coming down thanks to a drug named ursodiol. I still experience major fatigue occasionally, usually around my menstrual cycle, and light itching every once in a while, about every three months or so. I am learning that just because I have three good months in a row that I still experience the symptoms cyclically. It is demoralizing because somewhere in my brain I think I am getting better and then I get my symptoms again.

Comment from: rebidue2, 45-54 Female (Patient) Published: October 28

I was just diagnosed with primary biliary stage 1-2. After two years of stomach pain along with fatigue, the third doctor I was sent to for a routine colonoscopy was alerted by my high liver levels. I told him that they were my "norm"(at least two yrs) along with my low blood platelets. Previous to this diagnosis it was thought I had Gastritis, gallstones or irritable bowl syndrome. After having 20 plus tests from ultrasounds, cat scans, endoscopy ect., they have done a liver biopsy and confirmed this disease. I have not read about one of my symptoms which is joint pain. The only way to describe it would be to picture yourself working out at the gym with a trainer for the first time. Your body is sore. But the next day it feels like you got hit by a car. That is the pain I am feeling. It however is not every day. Haven't been able to pin point why some days and not others. It is more prominent on the days that I have severe fatigue though. I do have the more common symptoms of fatigue, itch and not sleeping. Hope this helps somebody.

Comment from: Lesa, 45-54 Female (Patient) Published: May 13

I was diagnosed 1 year ago when I went to a Family doctor because I was too tired and I was itching for no apparent reason. He did blood work. I was several quarts low as he put it, very Anemic. He also ran liver function tests and he did not like what he saw. He suspected PBC (he looked on WebMD while I was in the office for symptoms like mine). I was put on Unisol and have been doing pretty good. I still have some itching occasionally and have to take Iron supplements. It is just smart to have things checked out further. I was the first PBC patient that this doctor has ever had.

Comment from: Glasgow, 65-74 Female (Patient) Published: May 07

I was diagnosed with PBC after a routine full physical. I had no symptoms but enzymes were elevated and after additional tests I had a liver biopsy which confirmed the diagnosis of early stage PBC. I started on Actigall, then Urso 4xday, now Urso Forte 500 2xday. I still do not have any real symptoms, with the exception of nasty little wart-like growths on legs and torso! I just turned 65. BTW: How do we get the name of this disease changed? It's annoying to be immediately classified as an alcoholic and then having to explain the condition!

Comment from: dubtrub, 65-74 Female (Patient) Published: January 14

I am a PBCer. I was diagnosed by my gastro who finally told me why I was thirsty, tired, and aggravated! At the time of diagnoses I knew something was wrong, but my docotor me to stop drinking! I wasn't. She gave me no satisfaction. When I saw the new gastro he relieved my suspicions. I didn't know it was that far advanced. I didn't know I had it at all. I started on Actigall & colchicine & prednisone. I've been doing well since then. After 5 liver biops, it's o.k. Hope this helps.

Comment from: TAS, 45-54 Female (Patient) Published: September 12

My PBC was diagnosed after nearly two years of visits to my primary care doc complaining of daily fatigue. I didn't even bother to mention the itching of the soles of my feet that had been going on for the past several years. I thought I had athletes feet; although, there were no signs of any such thing. After finally collapsing from exhaustion and a blood test showed reactivated Epstein Barr virus, I was referred to a rheumatologist who ran the AMA-M2 that confirmed my PBC. My liver function tests are actually normal.

Comment from: arleneb726, 65-74 Female Published: August 05

I did not know of any symptoms but had routine blood liver panel work because I was on a cholesterol drug. Elevated readings followed by a visit to a specialist, then liver biopsy, then more blood tests determined the diagnosis. Reading an article on PBC today I may have found the answer to the itching that has annoyed me moderately in the last month.

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