Fatigue
The Mount Sinai Medical Center
October 1999
Question:
Can you explain why some
sufferers of pbc have chronic fatigue and others are
totally unaffected and can carry on as normal, and yet they have or have had
extreme itching?
Answer:
The subjective nature of
the complaint (chronic fatigue) has made it difficult to scientifically study
this symptom. The same thing goes for itching. In late stages, the itch may
persist, although like fatigue, itching can also be one of the earliest
manifestations of the disease and it may or may not persist with or without
treatment.
Hugo
E. Vargas M.D.
Medical Director,
Transplantation
University of Pittsburgh Medical Center
November 1999
Question:
Fatigue plagues most
everyone with PBC. It is debilitating -- really interfering with life and daily
plans. Please explain what causes the fatigue. Is any research being done to
solve this issue? Should one push to continue exercising during a fatigue
episode?
Answer:
Fatigue is not unique to
PBC and is one of the more common problems in the setting of chronic liver
disease. Despite efforts to figure out why it develops, it has been hard. It is
particularly difficult to study because it is a complaint that although real is
difficult to measure. I recommend to my patients to exercise as tolerated.
Howard
Worman M.D.
Division of Digestive and
Liver Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
New York, NY 10032
December 1999
Question:
Is there anything that a
person with PBC can take that will help with the fatigue?
Answer:
Some patients with liver
disease suffer from fatigue, some don't.
The cause is not clear.
There is no single activity that can relieve fatigue. Medications are not
helpful. In part, maintaining a positive attitude may help ("I know I'm
tired but I'm not going to let it get to me."). This is not always
possible for individuals with severe fatigue.
Arranging your daily
schedule so that you have time to rest may also help.
Similarly, doing most of
your activities when you feel the best (e.g. early morning, late afternoon) may
also be beneficial. Finally, a regular exercise program may help one overcome
fatigue. Before starting an exercise program, individuals with PBC should
consult their doctors.
The Mount Sinai Medical Center
February 2000
Question:
Since I've been taking prevalite I have been experiencing muscle aches and pains
in my back, hips and knees. Could this be a side effect of the drug? I take two
packets a day in the morning for the itching. If this is a side effect of the
drug, would you advise your patient to stop taking it? Is there something you
would prescribe?
Answer:
Prevalite (cholestyramine) should not cause the
symptoms you describe. However, any drug is capable of causing any side effect
in a given individual. Under your doctor's supervision, you might want to
discontinue the therapy for a week or so and see if the symptoms resolve. If
they do, I would recommend testing the medication again in a few weeks to see
if the symptoms are truly due to the Prevalite.
The Mount Sinai Medical Center
February 2000
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.
Howard
Worman M.D.
Division of Digestive and
Liver Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
New York, NY 10032
February 2000
Question:
I suffer fatigue on an
ongoing daily basis. I have been told that since I am on Urso
and my blood work is good that my PBC is not the cause of the fatigue. Yet here
I am and so are many other PBCers I have listened too. Please explain fatigue
and PBC.
Answer:
Some patients with chronic
liver diseases, including PBC, suffer from fatigue. I am not aware of any study
that correlates fatigue with "blood work" (presumably you are
referring to laboratory tests such as alkaline phosphatase
activity, etc.). To my knowledge, there is no direct association between
fatigue in liver disease and any laboratory test results. The cause of fatigue
in chronic liver disease is not clear. And it is often difficult or impossible
to determine if "fatigue" is a result of the underlying liver disease
or something else (e.g. depression). But fatigue can result from chronic liver
disease.
There is no single activity
that can relieve fatigue. Medications are probably not helpful. In part,
maintaining a positive attitude may help ("I know I'm tired but I'm not
going to let it get to me."). This is not always possible for individuals
with severe fatigue. Arranging your daily schedule so that you have time to
rest may also help. Similarly, doing most of your activities when you feel the
best (e.g. early morning) may also be beneficial.
Finally, a regular exercise
program may help overcome fatigue. In the near future, my colleague at Columbia
Dr. Nora Bergasa plans to start a study of regular
exercise for fatigue associated with liver disease. Before starting an exercise
program, individuals with PBC should consult their doctors.
Hugo
E. Vargas M.D.
Medical Director,
Transplantation
University of Pittsburgh Medical Center
June 2000
Question:
I have heard some people
taking Carnitor to help with the fatigue. Can you
give me some information about what this drug does and what the indications are
for its use? Who should take it? Do you have suggestions for the PBC fatigue?
Answer:
Carnitine metabolism has been found to be abnormal in patients with PBC.
However, I know of no study that links supplementation of Carnitine
to improvement in fatigue. The leading theories about the fatigue of PBC
include endocrine impairment, serotonin neurotransmitter abnormalities and
possible auto-immune effects.
David
Bernstein, M.D.
Chief, Division of
November 2002
Question:
People always say "I'm tired too," and it's hard to
explain our fatigue. How would the
doctors suggest we explain PBC fatigue to others?
Answer:
The symptoms of fatigue are about the same regardless of the cause.
The difference in PBC is
that fatigue is not situational nor is it generally relieved by rest and sleep.
Most people are tired from either lack of sleep, stress or situational or true
depression. Once people are well rested, stress is relieved or depression
resolved, fatigue improves.
This is not true in PBC as the source of fatigue is different. The
fatigue is a result of the disease and is progressive. It tends not to get
better. Only treatment of the disease will improve fatigue and currently, there
are no good therapies which improve the fatigue associated with PBC.
Andrew
Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question:
Fatigue: Could you explain why it is so bad in PBC? What causes it?
Answer:
All liver disease can have severe fatigue as the main complaint. This probably
occurs because the liver is the main manufacture and degradation organ for the
body. So if this is deficient, the main result is lack of energy.
Andrew
Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question:
Is there anything that can be done to help?
Answer:
As fatigue is the main presenting factor for depression, we sometimes use
anti-depressants to boost energy.