PRIMARY BILIARY CIRRHOSIS ORGANIZATION  aka PBCers Organization

DOCTORS PANEL QUESTIONS & ANSWERS


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: 
Alfred L. Baker, M.D.
Division of Gastroenterology & Hepatology
Northwestern Memorial Hospital, Chicago, IL

2004

PBCers Questions

QUESTION 1
Hep C & PBC
I find out in October if my Hep C is still in remission; completed the year of treatment in April.  I just wonder, if Hep C does return, does that change the prognosis and/or treatment in any way, or speed up the need for a transplant? 

ANSWER 1
You state that your hepatitis C was in remission in April, meaning that your hepatitis C virus was undetectable using a sensitive assay such as one using PCR (polymerase chain reaction technology).  Hopefully your liver chemistry tests were normal as well.  If your tests show the same results in October, six months after completing therapy, you will have achieved a sustained viral response (SVR).  Patients who reach SVR have a high likelihood of remaining in remission for years, and I think we can begin to think about cure for such individuals.  Should the virus become detectable again when your blood is tested in October, this might result in additional liver injury.  Although it could mean that you might need transplantation earlier, the progression of hepatitis C varies widely and your case would need to be monitored by your physician to determine how rapidly your disease is worsening.


QUESTION 2
I know that increased bilirubin indicates progression of PBC.  At what level should a person or doctor be concerned?  What is the extreme high end of the bilirubin count just before transplant is indicated.

ANSWER 2
Several prognostic indices have been developed to help physicians determine the rate of progression of PBC.  These indices incorporate a variety of liver chemistry tests and sometimes the results from a liver biopsy.  They are a little difficult to apply in an office situation, and most of the important prognostic information is carried by the total serum bilirubin.  When the serum bilirubin reaches 5-10 mg/dL and no cause is apparent besides the PBC, it is reasonable to begin to consider the possibility of liver transplantation.  Of course, should there be complications such as gastrointestinal bleeding or refractory itching, the procedure might be considered earlier.  There is no absolute level for the serum bilirubin that dictates the performance of a liver transplant. 


QUESTION 3
Before actually becoming jaundiced, and before a person's eyes turn yellow, does skin color change to a sallow or darkish color?
Could you tell me the cause of the little white bumps under my eyes?

ANWER 3
Skin color can change in liver disease of any cause before jaundice is obvious.  Patients with pale skin or skin damage from sun exposure might see color changes more easily.  Pruritis (itching) might contribute to skin darkening.  Other medical conditions such as anemia, thyroid disease, or adrenal insufficiency could also contribute to a change in skin color. 

Xanthelasmas are small fatty deposits around eyelids that are occasionally seen in patients with PBC and could be the problem in your case.  Ask your ophthalmologist what he thinks about these lesions. 


QUESTION 4
Ductopenia - at what stage does this occur in pbc? If the percentage is 20% does
it generally increase?  What affect does this have on the liver?  Does it slow the metabolism? 

ANSWER 4
Ductopenia is a feature of several liver diseases including PBC that can be seen on a liver biopsy.  It means that some of the microscopic bile ducts in the liver have been destroyed and suggests that it may be difficult for bile to travel from the liver cells to the large bile duct outside the liver.  It may be present with inflammation alone in early histologic stages and is accompanied by fibrosis and even cirrhosis in more advanced stages.  It is important to recognize that histologic severity does not always correlate with the clinical symptoms the patient experiences.

The main effects of ductopenia are to decrease the secretion of bile into the intestine.  Because the bile does not reach the intestine, absorption may decrease, particularly affecting fat.  The retention of bile in the liver is toxic to liver cells and probably contributes to liver damage in patients with PBC. 


QUESTION 5
What herbs or teas should PBCers avoid that will damage the liver?
Do you recommend any herbs or all natural products to your patients?

ANSWER 5
There is no substantial evidence that any natural food or nutritional substance is beneficial to patients with PBC and for this reason, I do not recommend any of these approaches for treatment.  Some patients feel that they benefit from milk thistle, and I think this supplement is safe if obtained from a manufacturer in the United States.  A multiple vitamin tablet without iron is reasonable for all patient with PBC, and if fat soluble vitamins A, D, and K are measured and found to be deficient, these should be supplemented. 

Because toxic reactions have been reported to a number of nutritional supplements prepared in Asia, I discourage patients from using these preparations.  A number of supplements are clearly toxic.  These  include germander chaparral, precursor androgens, and ephedra-containing products.  You should  talk with your physician about supplements if there are specific ones you wish to use. 


QUESTION 6
A doctor on our local TV recommended everyone, particularly women should get the C reactive protein blood test to assess their risk for a heart attack.  Do you recommend this test for those of us with PBC and do you think PBC would affect the results?
Other than normal liver tests, do you recommend any other tests PBCers should have?

ANSWER 6
Several months ago, there was a flurry of interest in the CRP test to help assess the risk of myocardial infarction.  More recently, some authorities have called into question the value of this test, and cardiologists do not generally recommend the test at present.  I do not know what the results might be in a PBC patient, but since the test monitors inflammation, I suspect the results would be elevated.  There is always an inflammatory component to the liver injury in PBC and this might well be detected in the CRP test.  I do not think it is a useful test to preform in PBC patients.

Regarding your question about other tests for PBC patients, thyroid disease, arthritis, and bone disease can accompany the condition. It might be reasonable to perform tests to search for problems in these areas.  Unfortunately, PBC patients can have diseases unrelated to their liver condition, and your physician can help decide what tests you need for these disorders. 

 

 

 

 

 

 

 

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