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Dr. Nancy Bach Answers Our Questions
19.) Question
How would doctors suggest we explain PBC fatigue to others? People always say,"I'm tired too", and it's hard for them to understand the fatigue I have. Do you have any suggestions to help with fatigue? Thanks!
Answer
That is a difficult question. Yes, everyone experiences fatigue from time to time but fatigue associated with liver disease has been studied extensively and has been shown to be unrelated to other causes of fatigue (lack of sleep, stress, depression etc.). Many describe the feeling as "hitting a wall".
Some individuals have no choice but to succumb to the fatigue and plan on napping each day. For most people, however, incorporating some sort of aerobic exercise into the routine is the best treatment. Many people scoff at this suggestion because when you feel tired, the last thing you want to do is exercise. Yet, when exercise becomes part of your routine, the time invested generally pays off by increasing your energy level. The principle is similar to a car battery recharging itself.
20.) Question
Is pancreas insufficiency common in PBC and what is the indication for this condition? Would this be diagnosed with blood labs? If so which ones?
Answer
Pancreatic insufficiency is actually uncommon in PBC, although there may be a loose association between the two. Among its many functions, the pancreas produces enzymes necessary for fat and protein digestion. Pancreatic insufficiency is generally suspected when an individual exhibits signs and symptoms of the pancreas not functioning properly. Diarrhea and/or signs of malnutrition may suggest the pancreas is not functioning properly. Tests of pancreatic insufficiency usually involve indirect assessment of how well the pancreas is functioning.
21.) Question
I was wondering if the WBC's and the absolute neutrophils have anything to do with PBC?
Answer
No direct association exists between PBC, and the WBC or absolute neutrophil counts. In the later phases of the disease, if one develops cirrhosis, the spleen may sequester white blood cells. This can lead to the measurement of lower white blood cell counts peripherally.
22.) Question
I know that PBC varies from individual to individual, but if a patient is diagnosed in Stage 1 and progresses to stage 4 in 6 years using medication what is the "typical" range of life expectancy before transplant or death? Do younger patients have any preferential treatment on listing?
Answer
I am assuming that the staging the question refers to is based on liver biopsy. With that assumption, the question is whether progressing from the earliest lesion of PBC to cirrhosis in 6 years is a negative finding. Liver biopsy findings can be misleading when it comes to PBC. The staging can vary from place to place in the liver. As a result, liver biopsies are subject to sampling errors, and studies have not found any correlation between the histologic stage of the disease (findings found on liver biopsy) and clinical findings (how well the patients does). That said, studies suggest that the prognosis is not quite as good for those that develop cirrhosis compared with those that don't. Nonetheless, many patients with liver biopsy findings indicative of cirrhosis live normal asymptomatic lives for prolonged periods of time.
Younger patients do not get preferential treatment on listing. For one thing, what one person considers a "younger patient" might not meet another person's definition.
23.) Question
My itching is severe - tried Questran/ Benadryl/ Atarax without success. I am Stage 2/ on Actigall & either Methytrexate or placebo & am in clinical Trials at MCV. Now they want to try Rifampin - as a nurse practitioner, I know the reasons for general prescribing and the side effects, etc. but do not know why this can help with PBC itching. Comments? Any other suggestions?
Answer
I can't tell you "why" rifampin helps, and I'm not sure anyone really understands the reason. Several papers have found rifampin beneficial in treating itching associated with liver diseases such as PBC. Other experimental therapies that have met some success include opiod antagonists (ex. naloxone) and ultraviolet light.
24.) Question
I would like to know what the statistics are on what percentage of people with PBC ever get to the stage that they would require a transplant.
Answer
I am not aware of any such statistic. One recent study found that survival in PBC patients without cirrhosis was comparable to that of an age and sex matched control population of patients. Mortality was slightly worse for those patients that had developed cirrhosis. Since many patients are first diagnosed in their 50s or 60s, and the disease can span several decades, many will die from natural causes before they do from PBC. With that caveat, it is my belief that fewer and fewer patients with PBC are requiring transplants. The reasons for that are not clear.
