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:
- 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. Intense and unrelenting itching of the skin.
- Gradual darkening (hyperpigmentation) or changes in skin texture, and various skin rashes.
- Small yellow or white bumps (xanthomas) under the skin, or around the eyes.
- Dry Eye Syndrome.
- Dry mouth, sometimes referred to as cotton mouth.
- Thyroid problems.
- 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:
- Osteoporosis or other metabolic bone disease.
- Enlarged abdomen from fluid accumulation.
- Easy bruising or bleeding.
- Jaundice (yellowing of the skin and eyes).
- Increased bilirubin.
- Internal bleeding in upper stomach and esophagus, that may be caused by varcies.
- 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.
- Hypersplenism, enlarged spleen.
- Fever, nausea and vomiting.
- Reflux and stomach ulcers.
- Weight increase or decrease.
- Swelling of the hands, legs and ankles. See edema and ascites.
- Sexual problems (impotence in men, absence of periods in women, lack of desire.)
- Trembling hands.
- 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.
- Hepatorenal syndrome, progressive deterioration of kidney function leading to kidney failure in a person with liver failure.
- Hepatopulmonary syndrome, associated with difficulty with breathing.
- Liver cancer (hepatocellular carcinoma).
- Abdominal pain or pressure in the liver area. (Yes it’s real)
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