Primary Biliary Cirrhosis, Basics 3

I’m pausing today before getting into how I was diagnosed with PBC, aka my year of living dreadfully. If you saw the kind comment for my next-to-last post, you probably want to know more about pbcers.org, and I’m happy to oblige.

Support:

The first stop site for those who have been diagnosed with PBC, suspect such a diagnosis is coming their way, or have a loved one with PBC is the Primary Biliary Cirrhosis Organization: pbcers.org. This is their statement of purpose:

The Primary Biliary Cirrhosis Organization aka PBCers is a wonderful source of support and education for PBC patients, family members, friends and other autoimmune liver disease patients. Formed in 1996, the PBCers is the largest online PBC support group with almost 3,000 members worldwide.

As a group, we discuss medical information, pain management, medications, research, ask questions, transplantation, vent our anger & fears, speak freely on the ups and downs of daily living, share our personal experiences and build lasting friendships.

On its website, you will find  a chat room, doctors panel Q & A, contact info for local support groups, conference announcements, and other services. Educational materials are also there to download; one of the organization’s aims is to increase awareness of what PBC is.

To learn more about other people’s experiences with  PBC, I’d start with these two services at pbcers. org:

  • Yahoo Group Daily Digest: Because this is a daily digest of that day’s forum postings, you get a single email a day instead of an email each time someone posts a comment. There is also an archive of the past nine years’ messages on the sign-up page.
  • PBCers Organization on Facebook.

A clarification:

Yesterday when I wrote about factors associated with increased risk for PBC, I don’t think I was very clear. These are not causes of the disease. If they have any relevance at all, it is that they may be triggers for whatever mechanism sets the autoimmune process in motion. My understanding is that you can  have a set of people all of whom have a genetic predisposition for an autoimmune condition, but just a few ever actually develop one. So the mystery is what triggered the conditions in those who got sick — how do they differ from those who didn’t? Something — or more likely some combination of things — must have happened to light their fuses.

Another source of information:

There’s a good resource, copyright free, on  at the National Digestive Diseases Information Clearinghouse, part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Here’s their summary statement, and a diagram showing those bile ducts you’re hearing so much about in these posts:

Primary biliary cirrhosis is a chronic disease that causes the bile ducts in the liver to become inflamed and damaged and, ultimately, disappear. Bile is a liquid produced in the liver that travels through

the bile ducts to the gallbladder and then the small intestine, where it helps digest fats and fat-soluble vitamins A, D, E, and K. When the bile ducts become damaged from chronic inflammation, bile builds up in the liver, injuring liver tissue. . . .

Primary biliary cirrhosis develops over time and may ultimately cause the liver to stop working completely. Most people are diagnosed early, before the disease progresses. Early treatment delays—but does not stop—the eventual onset of cirrhosis and liver failure. When a person has end-stage liver disease, a liver transplant is necessary for survival.

And these are their “Points to Remember”:

  • Primary biliary cirrhosis is a chronic disease that causes the bile ducts in the liver to become inflamed and damaged and, ultimately, disappear.
  • Injured liver tissue from chronic inflammation and the buildup of bile leads to cirrhosis, a condition in which the liver slowly deteriorates and malfunctions.
  • The cause of primary biliary cirrhosis is unknown. Most research suggests the disease is an autoimmune condition.
  • Primary biliary cirrhosis is more common in people who have a parent or sibling—articularly an identical twin—with the disease.
  • Most people are diagnosed early, before the disease progresses. The disease is often discovered when routine blood tests to check liver function are abnormal.
  • Many people with primary biliary cirrhosis do not have symptoms until after the disease is diagnosed.
  • The first and most common symptoms of the disease are itching, called pruritus, and fatigue. Other symptoms include dry eyes and mouth and jaundice.
  • The anti-mitochondrial antibody (AMA) blood test, the alkaline phosphatase blood test, and a liver biopsy may be necessary to confirm a diagnosis of primary biliary cirrhosis.
  • Some of the complications of primary biliary cirrhosis are osteoporosis and maldigestion.
  • Early treatment delays—but does not stop—the eventual onset of cirrhosis and liver failure.
  • Ursodiol (Actigall) is the only drug approved by the U.S. Food and Drug Administration for the treatment of primary biliary cirrhosis.
  • Liver transplantation is the only treatment that will cure primary biliary cirrhosis. A liver transplant is considered when complications cannot be controlled by treatment.
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20 thoughts on “Primary Biliary Cirrhosis, Basics 3

  1. Hi,first time on this site,also new to computers,not new at all with pbc,I’m a 5 yr. veteran,so to speak.Hopefully,at some point maybe my experiences can help someone else.

  2. I think this is one of the most vital info for me.

    And i’m glad reading your article. But should remark on some general things, The web site style is ideal, the
    articles is really excellent : D. Good job, cheers

  3. I’ve just discovered this blog…..read that some people ask for alternative medication to Urso.
    One US Company named Intercept develops a medicament called OCA targeted to those people who are not or not enough responsive to Urso.
    They’ve already applied for Approval for Marketing and expect that next year (2015) the Medicament will be avaliable to Patients.

    There are 2 Other companies known to me who is developing further medicaments. One is loacated iN Switzerland, called NovImmune.
    The other is in Germany called Medigene, but sold the rights of their medicament to Dr. Falk Gmbh, who should further develop and market the medicament.
    Candidate medicaments of these 2 companies are different in nature than of Intercept’s OCA.
    These are so called Monoclonal Antibodies, that is in Lab created and designed Antibodies that target certain Molecules. Goal is not only to delay the diesea process but stop it at ground. You can read further information on their pages:

    http://www.interceptpharma.com/development/primary-biliary-cirrhosis/
    http://www.medigene.com/products-pipeline/development-projects/rhudex
    http://www.novimmune.com/products/ni-0801.html

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  8. Hi there! This is kind of off topic but I need some advice from an established blog.

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  9. I’m impressed, I must say. Seldom do I encounter a blog that’s equally educative and engaging, and let me tell you, you have hit the nail on the head.
    The issue is something that not enough people are speaking intelligently about.

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  10. Fantastic blog! Do you have any helpful hints for aspiring writers?
    I’m hoping to start my own site soon but I’m a little lost on everything.

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  11. When I initially commented I seem to have clicked on the -Notify me when new comments are added- checkbox
    and from now on every time a comment is added I recieve
    4 emails with the same comment. Perhaps there is a
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  12. I am sorry it has taken me so long to reply. I am moving out of state and have been neglecting my blogs. I urge you to post on pbcers.org because I know that this question has been addressed there before. Best of luck and I’ll have a look around, too.

  13. Im trying to find out if any of the Pharmacutical companies that produce meds for PBC has a program for uninsured people. I was recently diagnosed with PBC and am uninsured and unable to work because of other health issues. Any help will be appreciated

  14. Laura, I hsaven’t a clue; I only take Urso Forte. You could raise this question at pbcers.org — usually someone there has a suggestion. Good luck.

  15. I am looking for someone with information on drugs used for pbc. I was on a combination of drugs, Urso and Colchine. Which was working fine, and this past January (2011) the Colchine is no longer manufactured. I now am taking 800mg of vitamin E. Two weeks ago I had my blood work done and my LFT and AMA is up again. Would anyone care to share any information on other drugs used, maybe a doctor that is familiar with PBC?
    Thank You, Laura

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