I Have Primary Biliary Cirrhosis

A Primary Biliary Cirrhosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Primary Biliary Cirrhosis. You're not alone. 135 People

    Diagnosed With PBC also Autoimmume Hep and SLE

    I have just been diagnosed with PBC , I have had autoimmume hepatsis which was diagnosed 10 years ago but was in remission until 12 months ago I also have the other autoimmune SLE, still trying to get my head around the PBC.
    he10051959 he10051959
    2 Responses Mar 9, 2012

    Why Is This Card In The Deck?

    I was recently diagnosed with pbc three weeks ago. I was seeing a cardiologist for heart palpitations and chest pains which were related to stress. He looked over my previous labs and decided to run additional tests due to my above normal liver count.  My Mitochondria...
    SmilenEz SmilenEz
    46-50, F
    2 Responses Feb 16, 2012

    Hey I Have Pbc About 5 Years Now

    but now i am having alot of pain with mine now i go and get blood work every week now will it get any better
    annepatterson annepatterson
    46-50, F
    Sep 25, 2012

    Ursodiol Side Effects

    I was diagnosed with PBC a few months ago, which was verified by AMA positive test (w/ a positive for AIH - AIH was discounted with a "general random biopsy) and a liver biopsy as well as elevated AP. I have had PBC for probably 8 years. Clinically, I am in Stage 3, but I still...
    rwallace rwallace
    41-45, F
    2 Responses Jul 28, 2013

    My Story

    Back in 2001 i was working full time and i was content. And then one day I became very sick. I went and saw my Dr. and they did every test known and alot of blood work. They told me I had PBC and Diabetes Type 2. they started me on actigall and insulin. They wanted me to follow...
    Janun Janun
    51-55, F
    1 Response Sep 17, 2012

    It'S A Journey

    I was dx about 18 months ago, but have known about elevated liver enzymes for close to 7 years. Had itchiness for close to 2 years before that, so when the doctor told me without medication my life expectancy was 3-5 years I was pretty scared. I've been on ursidiol for about a...
    SB1966 SB1966
    51-55, F
    1 Response May 19, 2013


    Hi, I was diagnosed with PBC about ten years ago and have been taking Urso since then. Last year I started to feel tired and weak and one morning I vomitted which I though was red juice, so I went on to work. I felt funny at work and left around noon to go to the emergency room...
    pam080100 pam080100
    3 Responses Jan 21, 2012

    I Want To Learn More About Pbc

    I was told by my doctor in Sept 09 that I have primary bililary cirrhosis.  I've been doing lots of research and am trying to find a web site where people with this disease can share thier experiences.  The worst part is the fatigue.  I'm trying to learn how to eat...
    pschlickeisen pschlickeisen
    46-50, F
    5 Responses Nov 14, 2009

    I Have Just Been Told I Have Pbc

    Im still in shock thought I just had gallstones! My Dr didn't tell me she had concerns with my liver. Went along to my appointment merrily thinking I would be told we will remove your gallbladder. The consultant was really nice said it's a lot to take in but this shud have been...
    Cowren Cowren
    1 Response Jul 8, 2011

    Not New With Pbc But New Here

    Hi there, I wanted to reach out to all of you and say hi and that I'm right there with all of you that I was dx with PBC in 2009. It was confirmed with a positive AMA test along with my high AP levels. I was devastated at the time and only 33yo. Now I'm 36yo and looking back I...
    Cicobuff79 Cicobuff79
    36-40, F
    1 Response Dec 21, 2012

    August 12th, 2013....Dr. Says You Have PBC....Progressive Phase...You Need A Transplant Right Away...

    Hi, I Am A 26 Year Old Male, Turning 27 Tomorrow. I Was Recently Diagnosed With PBC, After Experience All Of The Symptoms For Years And Every Other Dr. Treated The Symptoms As Something Else, Til Last July Til Now I Lost Over 150lbs Out Of No Where And Still Losing...I Relocated...
    power2overcome power2overcome
    2 Responses Aug 30, 2013

    I Have PBC

    I was recently diagnosed with PBC and some other Autoimmune Hep disease and the doctor has told me that I've had it for several years. I have been dealing with fatigue, itching and occasional liver pain. I have two doctors giving me two different opinions on how to deal with this...
    stacyis2 stacyis2
    46-50, F
    Oct 5, 2013

    I Have Pbc And I Am Scared

    I just found out that  I have PBC and I dont know what to expect, I go for a liver biopsy on Friday, to find out the stage of it, and so they can give me medicine.  I dont know what to expect....can anyone helpme???
    klbme klbme
    36-40, F
    4 Responses Jan 30, 2011

    Well, I haven't been diagnosed

    but I have pretty much diagnosed myself with all my research. I have had severe itching since March and saw my Gynecologist and had a culture and inflammation test that came back negative. So after months of living with the itching out of pure embarrassment, I finally decided to...
    jbrad123 jbrad123
    36-40, F
    Nov 19, 2015

    One Year Ago Today

    I was officially diagnosed one year ago after a liver biopsy. I was 23. After one year on Urso my enzymes are still chronically elevated. I have considered seeing the hepatology group at Mayo clinic. Has anyone been there? Thoughts on that? I appreciate it. Thank you!
    Nykaba Nykaba
    22-25, F
    6 Responses Feb 20, 2013

    Diagnosed 2 Years Ago

    I have PBC and take Ursodiol for it.   I don't really know what to expect.  I have a wonderful doctor who has explained I was diagnosed in stage 2 and that everyone is different.   How do we know?  My itching has stopped but i have steady moderate pain under...
    Jazzy418 Jazzy418
    4 Responses Sep 28, 2010

    Fatigue With Pbc

    I have recently found out that the latest thinking is that the level of Fatigue is related to Anti Mitochondrial Antibodies and not dependant on Liver Function Tests. I suffer from pain and fatigue most likely caused by PBC though I have other problems as well. Some suggest that...
    thehubby thehubby
    51-55, M
    4 Responses Nov 19, 2009

    The Beginning Of Pbc

    I was diagnosed with PBC about six weeks ago and it has been a nightmare. I was started on 900 mg of ursodiol. Day three, I developed an allergic reaction to the med with an itch you would not believe. Cholestyramine powder was added once a day either two hours before the...
    jeralynliggins58 jeralynliggins58
    1 Response Sep 26, 2012

    Urso (ursodial) The Medication

    I assume everyone with this horrid disease is taking this medication.  How long have you been taking it and have you had any side effects?  Do you know if the medication is helping?   I know its not a cure but it will retard the disease.  What are your thoughts on this...
    SmilenEz SmilenEz
    46-50, F
    7 Responses Feb 28, 2012

    PBC Friends

    I was told about a year ago, I have Primary Biliary Cirrhosis stage 3. Life has become a battle! I have lost my job due to my memory loss, panic and anxiety attacks. I am alone and struggling, It's become easier to isolated myself from everyone. I need help and a friend to...
    Laverne1017 Laverne1017
    46-50, F
    3 Responses Jan 30, 2013

    My Latest Situation

    The Doctors say I have this PBC.  I feel tired all the time, with no energy.   Also I do not sleep well at night, and the medicine makes me drink a lot of water,so I shall see as time goes on.  I don't know what is the best diet to try to follow, so I...
    lomontj lomontj
    Apr 30, 2010

    Autoimmune Bonanza!

    Hi, I was diagnosed with PBC about a year ago. I have had lupus nephritis for 42 years since i was 13. Plus some other autoimmune things like pernicious anemia and reynaud's. Since being diagnosed with PBC I took ursodiol for three months and my liver enzymes went UP! Twice as...
    Geling Geling
    May 6, 2013

    Some Good News For Once

    Hello Fellow PBCers: I was first diagnosed in 2010 and I've been a member of the PBCers Digest since the day I was diagnosed. I rarely write but read all the time. I just wanted to share a story from one of the members. Her story goes like this: I just wanted to share the...
    56-60, F
    7 Responses Apr 13, 2012

    It was just confirmed yesterday

    that I do have PCB. I'm 32 and scared of what's to come. I think I have more fear because my cousin died at. 36 due to liver cancer. I just started medication last night for it. I've been sick for years, gallbladder removed and still had problems so I'm glad I have an answer...
    supernanny911 supernanny911
    36-40, F
    1 Response May 30, 2014

    New To Pbc

    I am 44.  Was just going to a routine dr. appt.  I take metformin for insulin resistance and my dr.  just did a routine liver function test.  It was normal except for the alkaline phosphatase level.  It was mildly elevated.  He referred me to a liver specialist to just be...
    kelzduncan kelzduncan
    41-45, F
    4 Responses Jan 14, 2012

    Help Me Understand...

    I have been to several sites where they talk about managing pain.....Im scarred...what pain are you talking about?  I dont have pain..is it coming????????????/
    46-50, F
    2 Responses Jun 13, 2012

    Primary Biliary Cirrhosis Journey With Christ

    Hi I too have PBC Dx 5 years ago. I also learned I was with child 1 month after my Dx. I understand how a family forgets that yes you have a " true disease and its slow progression ". I have days when the fatigue is so over whelming I can barely keep my eyes open. As my 4...
    Kehaulovesjesus Kehaulovesjesus
    1 Response Jun 3, 2013

    Do I Have Pbc??

    dear users, supporters and caregivers I am from Bangladesh, needless to say that the medical treatment for cirrhosis is not that much advanced here. Last 24th august i had been hospitalized for esophagal varices that is vomiting blood from intestine the due to hight presuure...
    putus putus
    1 Response Sep 8, 2010

    Need Of A Support Group

    Need of a support group in Louisville, KY. Their are groups in other places that meet have lunch and share. Being a part of the PBC group online has help but there is nothing like looking at each other, hugging and crying together.
    56-60, F
    1 Response Apr 13, 2012

    Recently Diagnosed....

    Here's my story: I went to see my general practitioner for a check up in the fall of 2011 and ran some blood tests because I am on an antidepressant medication for chronic migraine. A few days later I got a call from his office nurse saying that he wanted to run the tests again...
    deleted deleted
    3 Responses Apr 19, 2012
    deleted deleted
    1 Response Nov 29, 2015

    What To Expect

    After more than a year of elevated liver enzymes, countless tests, including MRIs, CTscans, ultrasounds, and countless blood work I finally had a liver biopsy. I received my diagnosis on Jan. 25, 2013, PBC. I am on 500 mg. of Urso twice a day. I won't see the liver specialist...
    KimC58 KimC58
    51-55, F
    7 Responses Feb 6, 2013


    Just found out about 3 weeks ago that I have PBC. Am on the medication Ursodiol - 300mg 3 times a day. Got my schedule down for the medication. Just had my gall bladder taken out and they did a liver biopsy at the same time to check out why my liver was stressed. I am tired a...
    pcates004 pcates004
    51-55, F
    1 Response Oct 24, 2012

    Living With PBC

    I was diagnosed with stage 3 PBC in 2001, I have been fortunate and responded well to medication. I have never actually talked to or met anyone els with PBC. My family does not take my PBC very serious and think I should still take care of everything and not complain.
    Willieone Willieone
    1 Response Mar 3, 2013

    Be Strong!

    I was diagnosed with PBC about 6 months ago after multiple blood tests, abdominal ultrasound and then liver biopsy. I had elevated liver enzymes on and off for about 4 years. I'm in stage 1-2. My symptoms are fatigue, nausea and occasional pain. I am a pediatric nurse and work...
    nolagh nolagh
    51-55, F
    4 Responses Apr 12, 2012

    Since 2001

    Still tired, but haven't given up. When I was diagnosed, I was told they 'caught' it very early. My family Dr (at that time), only recommended the AMA test because she recently had 2 other patients diagnosed and wanted to rule it out (most family physicians see only one or two...
    PrairieGrl PrairieGrl
    61-65, F
    2 Responses Sep 23, 2013

    Stay Strong Never Give Up

    I was diagnosed with Pbc 6 years ago. I was initially devastated. I was shocked that a doctor would deliver that kind of diagnosis and just send me home. I continued to see him over a period of 4 months, (3 visits). He did nothing but draw blood, ask me how I was doing each visit...
    6yrs 6yrs
    2 Responses Sep 27, 2011

    It's Been A Long Journey!

    I was diagnosed with PBC in 1997 at the age of 47. I was totally asymptomatic and the diagnosis was made in conjunction for treatment of another medical problem. I was seen at Mayo Clinic and was given this prognosis: in 15 to 20 years I would need a liver transplant, there was...
    burns023 burns023
    2 Responses Mar 24, 2011


    Thats the date I was diagnosis with PBC,when I turned 50 my life changed in front of my eyes,not only PBC( stage 4) but RA,HEP B,HIGH BLOOD PRESSURE,CELIAC DISEASE, but with all of this I don't have alot of symptoms that other people have, fatigue,the itch, taking urso,I don't...
    beccafromwisconsin beccafromwisconsin
    51-55, F
    Sep 21, 2012

    Diagnosed Two Years Ago With Primary Biliary Cirrhosis

    Hi.. I was diagnosed aproximately two years ago. I did not realize I had it till I went to the Dr. for some other testing and they found it. I take ursidiol twice a day.My other problem is the fact that I have osteoporosis and sciatica pain from a really bad back. I am now on...
    thetennischick thetennischick
    1 Response Nov 6, 2011

    I Was Diagnosed With Pbc 2 Years Ago

    My husband and I started a business together, we bought a property in Mont Tremblant to rent because we have always loved going there for many years.    The Bank that we deal had to have one of their insurance nurses come and visit us.  We had blood tests done...
    jenthers jenthers
    41-45, F
    1 Response Nov 27, 2009


    So, back in February I went to the hospital for some pro-op tests before a Workers Comp related back surgery. They called me and told me my liver enzymes where elevated and they were gonna cancell my surgery until I see a GI. Now, I knew my enzymes were elevated some. I had back...
    JudyCombs JudyCombs
    46-50, F
    1 Response May 3, 2012

    Live Your Life

    I have cirrhosis of the liver I find out about it 5yr ago at frist,the only thing I could think about is ,that I was going to die,now I'am in stage 4 so what I not leting this get me down I will live.I stop drinking 2yr ago it was not hard for me to give it up becouse I wanted to...
    acdurham51 acdurham51
    2 Responses Feb 28, 2012

    I Have Primary Biliary Cirrhosis And Trigeminal Neuralgia And Intractable Migraines With Aura

    Although I have had migraine headaches since I was 13, they became really bad after I developed this very odd (and rare) neuralogical problem: trigeminal neuralgia. It impacts the right lower quadrant of my face and involves unpredictable sharp, stabbing pain. I had brain surgery...
    burns023 burns023
    2 Responses Mar 24, 2011

    Hey, my doctor has given me a preliminary

    diagnosis of PBC. I have to see a consultant to confirm. I have no idea what it is, what "stage" I am at or what is going on at all. I have run out of people willing to listen to someone who doesn't have a diagnosis. All at sea would be the best description for where I am right...
    deleted deleted
    1 Response Sep 17, 2015

    Worried about taking medication UrDA

    and there's no effect on the fatigue. Anyone have any good suggestions for dealing with it? Diet changes? Complimentary medicine? Thanks!
    wonderwoman100 wonderwoman100
    46-50, F
    Jun 30, 2014

    Told I Have Pbc Today....

    Was told today..PBC.   Doc said on phone  "we have med to control it"....so Im thinking all is fine....then I read up on it...all is not fine.  I have a 15 yo daughter...who...whether she knows it or not...needs me.  I read up on symptoms...been going to docs for about to...
    46-50, F
    4 Responses Jun 13, 2012
More Stories