David Bernstein, M.D.
Director of
Thanks to Dr. Bernstein and all the
doctors on our panel for their
dedication to liver disease, and the time and energy they give to the
PBCers Organization.
QUESTION 1
What is the best treatment for osteoporosis in persons who have PBC?
Could you comment in regard to IV drip treatment given once a year.
Has adequate research on this been done?
Would this be a good choice for PBCers who have side effects to
Fosomax and Actonel?
ANSWER 1
Osteoporosis is a late complication of PBC and the symptoms
associated with osteoporosis can adversely impact upon a patient's
quality of life. While many treatments have been utilized, none are
ideal. The use of calcium and vitamin D to prevent osteomalacia makes
sense however these products do not prevent bone loss or improve the
lumbar mineral degeneration seen in osteoporosis. Several small
studies have looked at the use of hormone replacement therapy,
calcitonin and sodium fluoride for the treatment of the osteoporosis
of PBC although none of these products can be currently recommended.
The bisphosphonates appear to the best treatment for the osteoporosis
of PBC although they must be used with caution. Patients with
esophageal varices should not receive oral bisphosphonates due to the
risk of pill esophagitis with resultant variceal bleeding. Recently,
Pamidronate, an intravenous bisphosphonate has been approved for the
treatment of Paget's disease of bone and hypercalcemia of malignancy.
Pamidronate is typically dosed with an initial 90 mg intravenously
followed by 30 mg intravenously every 3 months. This regimen has been
used "off-label" to treat osteoporosis in patients who are not able
to tolerate oral bisphosphonates however there is currently no data
available for the use of this product in patients with PBC.
QUESTION 2
Is it possible to go through a liver biopsy and not come out with a
definite diagnosis as to what is causing THE liver panel to be
elevated? Wouldn't the biopsy give a deffinate diagnosis?
ANSWER 2
One of the common misconceptions is that a liver biopsy will
unequivocally determine the etiology of liver disease. The indication
for liver biopsy must be assessed in each individual case. In many
patients, such as those with known hepatitis C or primary biliary
cirrhosis, a liver biopsy is performed to stage the disease in order
to determine someone's short and long term prognosis. In many other
cases, a liver biopsy is performed in order to determine the etiology
of underlying abnormal liver chemistries such as the determination of
the presence of non-alcoholic fatty liver disease. Despite the fact
that a liver biopsy is the only way of assessing underlying liver
damage, many patients will continue to have unexplained liver test
abnormalities despite having a normal liver biopsy. Many of these
abnormal liver enzymes can be explained by analyzing the medication
list that someone is taking. Other diseases such as thyroid disease
or celiac sprue may cause abnormal liver enzymes in the presence of a
normal liver biopsy.
QUESTION 3
What is parathyroid hormone by daily injection. This is commercially
available under the trade name FORTEO.
Would this be suitable for someone with PBC?
ANSWER 3
Parathyroid hormone is a hormone which has been used to stimulate
bone growth in post-menopausal women at risk for bone fracture.
Several recent studies have shown that injection of this product may
be effective in treating osteoporosis. While these preliminary
results are exciting, intravenous parathyroid hormone has not been
studied in patients with PBC. I do not recommend its use until safety
studies have been performed in people with PBC.
QUESTION 4
Is there any benefit or detriment in saunas or steam baths for people
with PBC?
ANSWER 4
Saunas and steam baths are felt by many to relieve joint aches and
lead to relaxation. There is no reason to believe that these effects
would not also apply to patients with PBC. However, I would be
cautious about having a sauna or steam bath in a PBC patient
suffering from pruritus as the warm moist environment may promote
further itching. In addition, as saunas and steam baths can lead to
excessive perspiration and dehydration, people with decompensated
liver disease should avoid entering into these arenas.
QUESTION 5
Many PBCers report problems in the hands. Is there a direct link
between PBC and stiff joints, pain and numbness in the hands? What
medication is safe for PBCers to take for it? Which type of doctor
would be best to see for it? Is these any research being done on
this? Is there a particular doctor or researcher who is an expert on
treatment for hand stiffness, weakness, pain and numbness?
ANSWER 5
PBC is a commonly associated with other diseases which affect the
joints such as rheumatoid arthritis, lupus and other mixed connective
tissue disorders. These conditions can lead to joint pains, numbness
and stiffness. Many of these symptoms can be treated with over-the-
counter non-steroidal anti-inflammatory medications such as
ibuprofen. If these simple measures do not work, it is reasonable to
try the cox-2 inhibitors such as Vioxx® or Celebrex®. If these simple
measures do not help, it is reasonable to be evaluated by a joint
doctor or rheumatologist. This is an area where a considerable amount
of research is going on and we should expect some promising advances
in the nest few years.
QUESTION 6
Once the immmune system has identified a foreign entity and that is
removed from the body can the immune system be trained to unlearn
that response?
ANSWER 6
The body's immune system reacts to foreign substances by developing
antibodies which remove these foreign substances when re-exposure
occurs. This process is called sensitization. The body can be de-
sensitized to allow re-exposure to a foreign entity such as an
antibiotic but this is not a naturally occurring response. Allergists
(physicians trained in the treatment of allergic reactions) are
trained in de-sensitization and they can be helpful in initiating
this process. I must caution that it is only done when there are no
substitutes to life saving medications such as antibiotics.
END.......
DISCLAIMER
The PBCers Organization is a nonprofit support group. We are NOT medical
professionals. The purposes of our organization is to offer support, help,
information and friendship. Members in the PBCers Organization are liver
disease patients, family members and friends discussing their personal
experiences, views or posting information/medical articles/links they found
might be of interest to other members. The PBCers Organization digest and
website MUST NOT be used as medical advice or a substitute for your own health
care provider. Always consult a doctor about your medical condition before
making any changes in your daily living and or treatment plan. PBC daily digest
and article digest are compiled/edited by group moderators.