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
September l999
Question
Is amount of itching directly related to the amount of damage to the liver?
b. All of us have been told to drink at least 64 ounces of water per
day....instead of drinking all plain water, can our fluids also consist of
decaff tea?
Answer
I referred this question to my colleague Dr. Nora V. Bergasa. Dr. Bergasa
is one of the world's leading experts on prutitus (itching) of cholestasis.
Dr. Bergasa replied: THERE ARE NO STUDIES THAT HAVE SPECIFICALLY COMPARED
THE PERCEPTION OF ITCH WITH THE DEGREE OF LIVER INJURY, AS ASSESSED BY LIVER
BIOPSY. THE ITCH OF LIVER DISEASE DOES NOT TEND TO CORRELATE WITH THE VALUES
OF LIVER ENZYMES REPORTED IN LABORATORY RESULTS, AND IT DOES NOT CORRELATE
WITH BILIRUBIN LEVELS. THERE IS NO APPARENT CONTRAINDICATION TO THE ADDITION
OF DECAF TEA TO THE LIQUIDS INGESTED.
Hugo E. Vargas,
M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
What would cause the itching
to improve, but the PBC to progress in stage? It would seem the itching would
get worse as the stage progresses.
Answer
It has also been observed that as the liver fails the itching improves. Some
have postulated that the PBC liver functions abnormally causing the pruritus,
but as less function is available, the evil humors that cause the itching
are also manufactured to a lesser degree.
Hugo E. Vargas,
M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
Is there any specific liver function test an indicator as to who should have
the itching, and to what extent (eg. AST, GGTP, etc.)? And, some of us have
been on the Questran/Cholestyramine powder, with no relief. Why would it
help some and not others?
Answer
Unfortunately the best marker for itching at this time is the itching itself.
Because the itching in PBC is probably multi-factorial, different agents
work in different patients with varied rates of success. I even find that
for any one patient what may have worked once does not work later in the
disease.
Hugo E. Vargas,
M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
Is any research being conducted
in the specific area of itching in order to provide the badly needed relief?
Many of us have no symptoms other than the relentless itching, and could
deal with the illness much better if there was relief other than cold showers,
antihistamines, Questran, Sarna lotion, etc. that only bring very short term
relief, if any.
Answer
The answer is yes. One researcher that has notably specialized in this area
and whose work I like to follow is Dr N. Bergasa in Beth Israel Medical Center
in New York. In her work she gives very interesting insights to the problem.
(For our PBCers, Dr. Bergasa recently joined NY Columbia University and Dr.
Worman wrote us about her. She is the leading expert on itching in PBC and
will be conducting trials in the NY area (as well as other experimental trials
in PBC) The PBCers will be contacted prior to beginning the project. Thanks,
Linie)
Hugo E. Vargas, M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
I seem to itch worse when
in the sun or exercise, while others complain their itching is worse when
they try to sleep. Why would any of these make the itching worse?
Answer
Your observations are quite on the mark. High ambient temperature makes the
symptoms worse. I usually recommend cool baths and cooler sleeping quarters
for my patients who itch with poor symptom control. The itching is probably
more noticeable at night (you may lay in bed focusing on the
itching).
Hugo E. Vargas,
M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
For those of us with PBC that suffer from the severe itching, most of us
have been told that the itching is a result of bile acids building up in
the blood stream. Please explain.
Answer
The answer that pruritus (itching) of PBC is due to increased bile acids
is probably too simplistic. Not all patients with high bile acids itch and
the converse is true. The honest truth is that the answer is more complicated
than that and that there may be mediators that the cholestatic liver (liver
with diseases such as PBC) overproduces or under-metabolizes that play a
role.
Hugo E. Vargas,
M.D.
Medical Director, Transplantation
University of Pittsburgh Medical Center
Pittsburgh, PA
February 2000
Question
There's been some information
that the itching may actually be caused by the body's creation of an
overabundance of Opiates, rather than Bile Acid, in the bloodstream. Do you
have knowledge of this?
Answer
Opiates have been implicated and an antagonist of the opiates naltrexone
can be used, however, success is mixed.
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
April 2000
Question
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
Itching secondary to liver diseases, including primary biliary cirrhosis,
is a very difficult symptom for patients to endure and for physicians to
manage. The reason why patients with liver disease itch is not known. It
has been thought that some substances accumulate in the blood as a result
of liver disease, causing itch. It is not know how many of the drugs that
may help itching in some cases actually work. At our own center
(Columbia-Presbyterian), we have several clinical trials underway to figure
out why some people with liver diseases itch and what drugs may help. For
more information on itching liver diseases, I refer the readers to
the following website: http://cpmcnet.columbia.edu/dept/gi/itching.html
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
April 2000
Question
Part 2 Also, is itching common with all liver diseases or just PBC?
Answer
Itching can occur in any liver disorder. However, it tends to occur more
frequently in so-called cholestatic liver disorders (those in which there
is a problem with bile flow), including PBC.
David Bernstein,
M.D.
Chief, Division of Gastroenterology
North Shore University Hospital
Manhasset, NY
July 2000
Question
Recently I heard that the recommended dosages for URSO have increased
significantly. Is this true or is the dosage still based on the person's
weight? When itching increases, would it help to increase the URSO dosage
by one tablet?
Answer
Initial URSO dosing is still recommended to be 13-15 mg per kilogram of body
weight. If the liver enzymes do not normalize, the dose can be increased
to 20 or even 30 mg per kilogram. When itching occurs, one of the treatment
options is to increase the URSO. Paradoxically, it is possible that increasing
the URSO may also worsen the itching. The mainstay of therapy for itching
remains the bile resin binders such as cholestyramine. It is important, however,
to remember that these bile resin binders can be taken at the same time as
the URSO or Actigall as they will lead to decreased absorption of these
compounds.
Andrew Mason MBBS
MRCPI
Associate Professor of Medicine
Division of Gastroenterology
Department of Medicine, University of Alberta
Edmonton, Canada T6G 2C2
December 2002
Question
Why does the itching of PBC seem to come and go? Do doctors know what causes
the itching?
Answer
There are factors in bile that are not adequately removed in PBC patients
that
cause the itching. Although Urso is of great help, when the therapy is started,
the itching can get worse as the Urso starts to increase the bile flow. So
we advise patients to stick with Urso therapy as it usually is of some benefit.
Nathan Bass,
M.D.
Professor of Medicine, Medical Director, Liver
Transplantation Program,
University of California
San Francisco
Question
Most of us have itching....some
say their itching is localized (Arms, face, hands, buttocks) while others
say they itch all over. Does the itching depend on the stage? It seems I
itched more in the earlier stage than I do now in later stage.
Answer
There is little work on itching patterns and we have recently become quite
interested in this. Itching is commonly worst on the extremities (arms, hands,
legs, feet) and inaccessible places like the back. It is often worse at night.
Yes, itching may abate as the disease progresses. The reason is unknown,
but may relate to a failure of the liver to manufacture the "pruritogen"
that causes the itch in the first place, as the overall function of the liver
fails.