Primary Biliary Cholangitis (Previously Called Primary Biliary Cirrhosis) in Grand Rapids, MI

Primary biliary cholangitis (PBC), formerly known as primary biliary cirrhosis, is a long-term autoimmune liver disease. It affects the small bile ducts inside the liver, causing inflammation, damage, and eventually scarring (fibrosis). Over time, this can lead to cirrhosis in some people, although many never reach that stage.

In Grand Rapids and across West Michigan, PBC is typically managed by liver specialists (hepatologists) and gastroenterologists at major health systems such as Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health.

What Does the Liver Do?

The liver has several vital roles, including:

  • Removing toxins and waste products from the blood
  • Processing nutrients from food into proteins, fats, and carbohydrates
  • Producing bile, a fluid that helps break down dietary fats

Bile is produced in the liver, stored in the gallbladder, and then released into the digestive tract through bile ducts. In PBC, these small bile ducts inside the liver are attacked by the immune system.

What Is Primary Biliary Cholangitis?

Primary biliary cholangitis is an autoimmune disease. For reasons that are not fully understood, the immune system mistakenly attacks the cells that line the small bile ducts in the liver. This leads to:

  • Chronic inflammation of the bile ducts
  • Damage and narrowing of the ducts
  • Buildup of bile in the liver (cholestasis)
  • Gradual replacement of healthy liver tissue with scar tissue (cirrhosis) in advanced cases

The older term “primary biliary cirrhosis” is no longer recommended because many people with PBC never develop cirrhosis. “Primary biliary cholangitis” more accurately describes inflammation of the bile ducts.

Who Gets PBC?

PBC can affect anyone, but:

  • Women are about 10 times more likely to develop PBC than men
  • It is usually diagnosed between ages 35 and 60
  • It may run slightly more often in families, suggesting a genetic component

The exact cause is unknown. Research has ruled out alcohol and typical diet as primary triggers. PBC is more common in certain regions (such as Scotland, Scandinavia, and North East England), but it is seen throughout the United States, including in Michigan.

PBC in Grand Rapids and Michigan

In the Grand Rapids area:

  • Residents often receive evaluation and treatment for PBC at Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health liver and GI clinics.
  • The Kent County Health Department and Grand Rapids Public Health can provide information on chronic disease management and referrals to specialists.
  • Michigan’s cold winters and long indoor seasons may increase the risk of vitamin D deficiency, which is important because PBC is associated with a higher risk of osteoporosis (weak bones). Local liver specialists may recommend vitamin D testing and supplementation.

Symptoms of Primary Biliary Cholangitis

Symptoms can vary widely. Some people have no symptoms at first and are diagnosed through routine blood tests. Others may have mild to severe symptoms that gradually worsen over time.

Common symptoms include:

  • Increasing fatigue
  • Chronically itchy skin (pruritus)
  • Jaundice (yellowing of the skin and eyes)
  • Dark urine and pale stools (in some cases)
  • Unexplained pigmentation (darkening) of the skin
  • Unexplained weight loss
  • Indigestion or discomfort after eating fatty foods
  • Easy bruising
  • Aching joints and muscle pain
  • Abdominal discomfort or pain in the upper right side (where the liver is located)
  • Bloating or a swollen abdomen due to fluid buildup (ascites)
  • Swollen feet or ankles (edema)

Because PBC affects bile flow and vitamin absorption, it also increases the risk of:

  • Osteoporosis (thinning of the bones)
  • Fat-soluble vitamin deficiencies (vitamins A, D, E, K)

In a cold-weather city like Grand Rapids, where people spend long periods indoors, bone health and vitamin D status are especially important for those living with PBC.

What Causes PBC?

PBC is an autoimmune disorder. The immune system attacks the bile ducts inside the liver, but the exact trigger is unknown. Current understanding:

  • Not caused by alcohol
  • Not caused by typical diet
  • May involve a combination of genetic susceptibility and environmental factors
  • Slightly more common in some families

Over time, chronic inflammation and scarring can narrow or block the small bile ducts. This leads to bile buildup in the liver, further inflammation, and eventual scarring of liver tissue.

How Is PBC Diagnosed?

PBC is often discovered during routine blood work or testing for other conditions. In Grand Rapids, testing is commonly done through primary care clinics and hospital laboratories associated with Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health.

Key tests include:

  • Blood tests

    • Liver function tests (LFTs) to check liver enzymes and bile flow
    • Autoantibody tests (especially anti-mitochondrial antibodies, or AMA), which are strongly associated with PBC

  • Imaging tests

    • Ultrasound scans to look at the liver and bile ducts
    • Sometimes CT scans or MRI/MRCP to rule out other causes of bile duct blockage

  • Liver biopsy

    • A small sample of liver tissue is taken and examined under a microscope
    • Helps confirm the diagnosis and assess the stage of liver damage

Early-stage PBC may be diagnosed before symptoms appear, which allows earlier treatment and monitoring.

Treatment for Primary Biliary Cholangitis

There is no cure for PBC at this time. However, treatment can:

  • Slow or sometimes halt the progression of liver damage
  • Improve liver tests
  • Reduce symptoms such as itching and fatigue
  • Lower the risk of complications

Treatment plans are usually managed by a gastroenterologist or hepatologist in collaboration with your primary care provider.

Medications to Slow Disease Progression

Commonly used medications include:

  • Ursodeoxycholic acid (UDCA, brand names such as Ursofalk)

    • First-line treatment for most people with PBC
    • Helps improve bile flow and liver tests
    • Slows progression of liver damage in many patients

  • Second-line medications (for those who do not respond adequately to UDCA)

    • Obeticholic acid (availability and use may vary; your Grand Rapids specialist will advise based on current U.S. guidelines)
    • Fibrates (certain cholesterol-lowering medications) may be considered in some cases

Your liver specialist in Grand Rapids will choose medications based on your lab results, symptoms, and overall health.

Managing Symptoms and Complications

Other parts of treatment may include:

  • Fat-soluble vitamin supplements (A, D, E, K) if absorption is reduced
  • Calcium and vitamin D supplementation to lower the risk of osteoporosis
  • Regular weight-bearing exercise (such as walking or light strength training) to support bone health, especially important during Michigan’s long winters
  • Low-salt diet and diuretics (water tablets) to help control fluid retention and swelling
  • Nutritious diet rich in vitamins, minerals, and trace elements
  • Reduced alcohol intake and avoidance of non-essential medications that can stress the liver

In severe cases where cirrhosis is advanced and the liver can no longer function well, a liver transplant may be considered. Transplant evaluation and coordination are typically handled through major transplant centers in Michigan; your Grand Rapids specialist can refer you if needed.

Reducing Skin Itching (Pruritus)

Chronically itchy skin is one of the most frustrating symptoms of PBC. Persistent scratching can lead to skin damage and scarring. In West Michigan’s dry winter air, itching can feel even worse, so skin care is especially important.

Medications

Common medications used to reduce itching include:

  • Cholestyramine
  • Rifampicin (rifampin)

Your doctor will decide which medication is best and how to use it safely with your liver condition.

Practical Tips for Itch Relief

In addition to medication, these strategies may help:

  • Keep fingernails short to reduce skin damage from scratching

  • Wear natural fibers, such as cotton, instead of synthetic fabrics that can irritate the skin

  • Moderate sun exposure may help some people (always use sun protection and follow your doctor’s advice)

  • Avoid overheating and very hot baths or showers

  • Avoid perfumes and scented products, including:

    • Scented soaps
    • Bath oils and bubble baths
    • Talcum powder

  • Take cool or lukewarm baths, and consider:

    • A cool bath with about one cup of bicarbonate of soda (baking soda) before bed to soothe the skin

Because Michigan winters are cold and dry, using a gentle, fragrance-free moisturizer after bathing can also help protect the skin and reduce itch.

Living With PBC in Grand Rapids

With early diagnosis, appropriate treatment, and regular monitoring, many people with PBC in Grand Rapids live active, full lives.

Helpful steps include:

  • Regular follow-up with your primary care provider and liver specialist
  • Routine blood tests and imaging as recommended
  • Vaccinations (such as hepatitis A and B, influenza, and pneumonia) as advised by your doctor
  • Healthy lifestyle choices: balanced diet, physical activity, avoiding smoking, and limiting alcohol

Local support and education can be important. Ask your care team about:

  • Referral to a gastroenterologist or hepatologist at Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health
  • Local or online PBC support groups (such as national organizations like the American Liver Foundation or disease-specific support communities)

When to See a Doctor in Grand Rapids

Contact your Grand Rapids healthcare provider if you notice:

  • Persistent fatigue that interferes with daily life
  • Ongoing or severe itching without a clear cause
  • Yellowing of your skin or eyes (jaundice)
  • Unexplained weight loss
  • Dark urine or pale stools
  • Swelling in your ankles, legs, or abdomen

Early evaluation can lead to earlier diagnosis and more effective management.

Key Points About Primary Biliary Cholangitis

  • PBC is an autoimmune disease that damages the small bile ducts inside the liver.
  • The exact cause is unknown, but alcohol and typical diet are not thought to be triggers.
  • Women between 35 and 60 are most commonly affected.
  • Symptoms vary widely and may range from none to severe; they often progress slowly over time.
  • There is no cure, but medications like ursodeoxycholic acid and other treatments can slow disease progression and relieve symptoms.
  • PBC increases the risk of osteoporosis and vitamin deficiencies, which is especially relevant in colder climates like Grand Rapids where sun exposure may be limited.
  • With specialist care and regular monitoring through Grand Rapids health systems, many people with PBC live long, meaningful lives.