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http://pbcers.org/ This is the LINK for the PBCers.Org front page

http://pbcers.org/linkindex.htm This is the LINK for the Index

page.....all the information I showed listed in yesterdays Digest is in LINK

form so just go to that page and click your way around. I don't know why the

post didn't come thru showing them as links. Joanne

http://pbcers.org/whatis.htm

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The Liver

The liver is the largest solid organ in the body, and is also the largest

gland. It weighs about three and a half pounds (1.6 kilograms). It measures

about 8 inches (20 cm) horizontally (across) and 6.5 inches (17 cm) vertically

(down) and is 4.5 inches (12 cm) thick. See what the liver does and how it can

do so much.

What Is Primary Biliary Cirrhosis?

By Linie

Many thanks to Doctors Palmer and Emil Miskovski for their help in

writing this article

Primary Biliary Cirrhosis (PBC) is a chronic liver disease that slowly

destroys the bile ducts within the liver (intrahepatic bile ducts). Liver

inflammation over a period of years may cause scarring which leads to cirrhosis.

PBC is NOT alcohol or drug related, and it is NOT contagious.

The name " Primary Biliary Cirrhosis " is somewhat deceiving since cirrhosis

only occurs in the last stage of the disease (stage 4) after many years of

inflammation. With early diagnosis and proper medications, most with PBC will

never reach the cirrhosis stage of PBC.

PBC is also called " Chronic Nonsuppurative Destructive Cholangitis " and

" Primary Autoimmune Cholangitis. " However, these alternative terms are not

widely accepted and therefore not in use.

Definition from New American Medical Dictionary:

a.. Primary: First in order of development, most important, arising

spontaneously.

b.. Biliary: Relating to or affecting the bile duct system or bile.

c.. Cirrhosis: An inflammatory disease of the liver associated with the

replacement of liver cells by fibrous tissue. Passage of blood through the liver

may eventually be obstructed by the cirrhosis.

The cause of PBC is still unknown, but it is not alcohol or drug induced.

Current studies suggest it may involve autoimmunity, infection, or genetic

predisposition, and does seem to appear more often in certain families. Women

are affected 10 times more than men, and PBC is usually diagnosed in patients

between the ages of 35 to 60 years.

Those with PBC usually look extremely healthy, and many are 10 to 30

pounds overweight. The slight bronze pigmentation of the skin is often present

in the advanced stage of the disease, and makes the individual look tanned. The

outward appearances doesn't tell the story of what is going on inside their

bodies. Even on the transplant list stage, many with PBC look healthy. A

person with PBC commonly hears comments such as " you look so healthy or you

don't look sick. "

Upon diagnosis, some doctors may suggest their patient start:

a.. Start a reduced sodium diet and or low fat diet. Nutrition

b.. In severely damaged livers, proteins may be restricted.

c.. Drink plenty of water and other fluids such as juice.

d.. Calcuim and Vitamin D. Calcium is the most common mineral in the

body and is required for proper functioning of most organs. It is particularly

needed in the normal development of the bones and teeth. Osteoporosis is a bone

disease where calcium leaves the bones, causing them to weaken, and is commonly

associated with PBC.

e.. Avoid or lower intake of alcohol

f.. Lower caffeine intake

g.. Avoid undue stress

h.. Exercise, if possible. Walking is the most common recommendation for

exercise.

i.. Stop smoking

The above suggestions have been found to be very helpful in liver disease,

but are common sense considered part of healthy living. PBC Menus and meal

plans by Norma J. Thiel, RD, Clinical Nutrition Manager Mountainview Hospital.

The number of patients being diagnosed at the asymptomatic stage has risen

dramatically over the past few years due to widespread laboratory screening.

Typically, the blood lab pattern reveals an elevated alkaline phosphatase level

with a normal bilirubin. Bilirubin does not increase until final disease stage.

There are four disease stages of PBC. >>*************( On this link are two

diagrams of the liver and it's location. )********

Medical tests used to confirm PBC:

a.. A liver biopsy helps confirms the diagnosis, but is not a

requirement.

b.. Ultrasound exam may be performed to visualize the bile ducts to

exclude an obstruction.

c.. Blood lab tests that show liver dysfunction:

a.. Liver function tests

b.. Antimitochondrial antibodies. Positive AMA is found in about 95%

of PBC patients.

c.. Serum cholesterol and lipoproteins may be increased.

d.. Haptoglobin & ACE levels may be altered

e.. Diagnostic tests

PBC advances slowly over a period of years. Most patients lead normal

lives for years without symptoms, depending on how early diagnosis is made.

There is no cure for PBC, but patients are showing good results in slowing the

disease progress with URSO 250 , Actigall and methotrexate. With the current

medications, it is becoming more common for the PBC patient to live a long life

without any complications from PBC, and in some cases actually lowering the

disease stage from original diagnosis stage.

PBC is considered an autoimmune disease. Some diagnosed with PBC, may

also be diagnosed with one or more other autoimmune diseases. Click for

diseases and conditions associated with PBC.

Most patients remain without symptoms for many years, and some may never

notice any symptoms. The initial symptoms vary among PBC patients, and the

varying symptoms can sometimes make it difficult for doctors to actually

diagnose PBC. The varying symptoms may be do to the individual, autoimmune

nature or other diseases associated with PBC. Symptoms may be present in any

combination and include any of the following:

a.. Fatigue may be the first symptom the patient notices, causing him or

her to visit their doctor. The fatigue associated with PBC appears to be

totally different from any other sort of fatigue. In early stages, many patients

have commented they could sleep for hours. While some in the later stages say

sleeping becomes more difficult. At this time, there is little research into the

cause and treatment of the liver disease fatigue. It is usually not due to

depression, and some researchers believe it is an abnormality of the axis

between the pituitary and the adrenal glands. Support and understanding from

family members, friends and the doctor is very important, making it somewhat

bearable.

b.. Intense and unrelenting itching of the skin.

c.. Gradual darkening (hyperpigmentation) or changes in skin texture,

and various skin rashes.

d.. Small yellow or white bumps (xanthomas) under the skin, or around

the eyes.

e.. Dry Eye Syndrome

f.. Dry mouth, sometimes referred to as cotton mouth.

g.. Thyroid problems

h.. Arthritic aches and pains in bones, muscles and joints are common.

In some, the pains can be severe and debilitating. Some even report severe pain

just touching leg, feet and hip bones, but this is NOT common.

Over the years, as the PBC progresses, other symptoms may appear. These

symptoms may include any of the following:

a.. Osteoporosis or other metabolic bone disease. See osteoporosis

exercises.

b.. Enlarged abdomen from fluid accumulation.

c.. Easy bruising or bleeding

d.. Jaundice (yellowing of the skin and eyes)

e.. Increased bilirubin

f.. Internal bleeding in upper stomach and esophagus, that may be caused

by varcies.

g.. Hepatic encephalopathy causing personality changes: dulling of

mental functions, neglect of personal appearance, forgetfulness and trouble

concentrating, changes in sleeping habits, confusion, breath odor and muscle

stiffness. Encephalopathy occurs in final stage of PBC.

h.. Hypersplenism, enlarged spleen

i.. Fever, nausea and vomiting

j.. Reflux and stomach ulcers

k.. Weight increase or decrease

l.. Swelling of the hands, legs and ankles. See edema and ascites

m.. Sexual problems (impotence in men, absence of periods in women, lack

of desire.)

n.. Trembling hands

o.. Difficulty in sleeping and changes in sleeping habits. Some PBC

patients have noted that itching intensifies when they lay down to sleep, and

those who have liver pain say it is more severe in a sleeping position.

p.. Hepatorenal syndrome, progressive deterioration of kidney function

leading to kidney failure in a person with liver failure.

q.. Hepatopulmonary syndrome, associated with difficulty with breathing.

r.. Liver cancer (hepatocellular carcinoma)

s.. Abdominal pain or pressure in the liver area. (Yes it's real)

As the PBC progresses, some patients require vitamin A, vitamin D,

vitamin E and vitamin K replacement therapy to add back fat-soluble vitamins

which are lost in fatty stools. A calcium supplement may be prescribed to help

prevent osteomalacia and osteoporosis.

When medical treatments, such as URSO 250 & URSO Forte, Actigall and

methotrexate, no longer control the disease, the patient should be evaluated for

a liver transplant. The end stage of PBC is liver failure. Many signs indicate

liver failure: increased bilirubin, jaundice, fluid accumulation or ascites,

malnutrition, gastrointestinal bleeding, intractable itching, bone fractures and

hepatic coma. Transplant is recommended before most of these symptoms occur.

Recent studies suggest that about 30% of those diagnosed with PBC will require a

transplant. The transplant outcome for PBC patients is excellent.

As with any other chronic illness, support and understanding is very

important in helping the PBC patient cope with day to day living.

continued on same page>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Educate your Family Members and Friends about PBC. (Printable version)

ABC's of PBC by Tropple (PBCer)

Poem Me & My PBC by Janice Hurst (PBCer)

also on same page>>>>>>>>>>

Anatomy & Functions of the Biliary System But you look good!

Common Characteristics of Liver Disease Complications of cirrhosis

Diagnostic tests Donating Blood

Fatigue in PBC Feeling Misunderstood: Living with Chronic Illness

" Fuzzy Brain " Some refer to it as a symptom in PBC Gastroenterology

Notebook

Glossary of Terms High Blood Pressure (Hypertension)

Hepatology terms all PBCers should know J. Worman, M.D. -

PBC

M. Vierling, M.D PBC site Liver, it's function & diseases

MedicineNet's Primary Biliary Cirrhosis (PBC) Center PBC is not

considered a terminal illness

Questions and Answers About Autoimmunity Sjogrens Syndrome

Strokes, Antiphospholipid Antibody Syndrome & PBC Waiting List

process & links of interest

also on same page>>>>>>>>>>>>

Abbreviations - Find out what those Medical abbreviations mean

Antiphospholipid Syndrome - what is it and what YOU should know.

Article PBC Disease Stages Canadian Liver Foundation

Clinical Trials on PBC & other liver diseases Costochondritis and

PBC

Hepatic Encephalopathy Hepatology interesting PBC & related

research articles

Hepatology terms all PBCers should know Liver Biopsy WSEC

Liver Study Unit at the University of Chicago Hospitals Lupus with

Liver Involvement, Article by J. Wallace, M.D.

Mayo Clinic - PBC Medical dictionary & scientific medical

dictionaries

NORD - Primary Biliary Cirrhosis Osteoporosis & Other Bone Diseases

Osteoporosis & Liver Disease Osteoporosis Management ECO-DG

Dispatch: New Diagnostic Technique

PBC UK Conference Notes Primary Biliary Cirrhosis Canadian Liver

Foundation

Primary Biliary Cirrhosis (PBC) West Shore Endoscopy Center

Questions you may want to ask your doctor

Transplant links URSO dosage by weight and cost chart

US (800) 950-8085 and Canada (800) 565-3255

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