We wish to thank all the members on our Doctors Panel, for giving us their time answering PBCers questions. We greatly appreciate all they do for us.
The following questions were answered by:
Cynthia Levy, M.D.
Question 1
Please explain the blood test called HCVFIBROSURETM. I read it predicts fibrosis and necroinflamatory activity in the liver and may take the place of a liver biopsy.
Answer 1
HCV Fibrosure TM is a blood test that uses a combination of six serum biochemical markers to predict fibrosis and necroinflammatory activity in the liver. This test has been validated as an alternative for liver biopsy in patients with viral hepatitis C and alcoholic liver disease. Future studies will assess its value in PBC. Certainly, the test is not useful to diagnose PBC, but could potentially be of value to follow histologic progression of the disease.
Question 2
Is pbc a contagious disease? Are there sexual risks to the nonpbc partner? Is it hereditary?
Answer 2
There is no evidence whatsoever that PBC is contagious, and this disease can not be transmitted through sexual contact. Most doctors believe that PBC is an immune mediated disease, likely resulting from a combination of genetic and environmental factors. There is indeed a high concordance rate among identical twins, and PBC appears to be more common among first degree relatives.
Question 3
Many PBC patients complain about difficulty sleeping. Is this a symptom of PBC. If not what else could be causing it?
Answer 3
Despite being a common complaint, insomnia is not a specific symptom of PBC. Other than poor sleep hygiene, frequent causes of insomnia in the setting of PBC are depression and excessive pruritus. This problem needs to be addressed with the physician, as difficulty sleeping may contribute to severe fatigue.
Question 4
It seems that serum cholesterol is often elevated in PBC patients. When is it necessary to treat elevated cholesterol levels? Is it successful (resulting in lower levels)? Is the new medicine Zetia a good choice for those with PBC?
Answer 4
High cholesterol levels should be treated when the patient has clinical evidence of atherosclerotic disease or when other risk factors that predispose to coronary heart disease are present. These factors are: hypertension, smoking, low HDL cholesterol (<40 mg/dL), age ( 45 for men, 55 for women), family history of premature coronary heart disease, obesity and glucose intolerance. According to the number of risk factors that you have and the level of LDL cholesterol your physician will be able to determine whether therapy is necessary or not. Treatment should address both lifestyle modification (diet and exercise) and pharmacological therapy regimens. There is no reason why not to consider ezetimibe (Zetia), which acts by preventing intestinal absorption of cholesterol without affecting vitamin absorption.
Question 5
Several doctors on the panel have said that data suggests that PBC fatigue is "central" (from the brain) rather than peripheral. Can you explain the presumed neurological basis of PBC and the evidence for it?
Answer 5
Although the pathogenesis of fatigue in PBC is still unclear, many investigators hypothesize that it is centrally mediated. That implies a problem in the mechanisms of neurotransmission (communication between cells in the nervous system). The basis for such hypothesis comes from studies in rat models and in male athletes, whereby modulation of serotonin neurotransmission led to improvement in fatigue. As for clinical trials, administration of the serotonin receptor antagonist Ondansetron (Zofran) led to significant improvement of fatigue in patients with chronic liver disease, but failed to in a population of patients with PBC. Alternatively, UK physicians have shown that fatigue in pre-cirrhotic PBC correlates with abnormal brain MRI and altered manganese levels, but, again, this remains to be confirmed.
Question 6
Is a positive AMA definitely diagnostic for PBC? If liver enzymes are slightly elevated or normal?
Answer 6
A positive AMA is not definitely diagnostic of PBC, but it makes the diagnosis extremely likely. On occasion, we will find a patient with positive AMA, normal liver enzymes and normal liver biopsy, who should not be diagnosed with PBC yet. However, an English study suggested that most of these individuals will eventually develop PBC. A patient with positive AMA associated with minimally elevated serum alkaline phosphatase (< 1.5 times the upper limit of normal) should probably undergo liver biopsy for confirmation. In addition, rare cases of false-positive AMA have been described among patients with nonalcoholic fatty liver disease or autoimmune hepatitis.
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