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Questions On Itching
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David Bernstein, M.D.
1. I've had itching from the beginning, usually on the soles of my feet and palms of my hands. I've also had an itchy throat, ears, and eyes for the same length of time and always considered them some kind of allergic reaction. When we speak of itching as a symptom of PBC, is the itching confined to a specific area of the body or is it possible to have itching throat, eyes, etc., as a result of liver disease, especially when allergy tests are negative?
Answer
Itching in PBC is generally not confined to a specific area of the body. It is usually worse at night and may effect any part of the body. The itching is usually worse when coarse garments are worn and may be exacerbated by dry skin or hot, humid weather.
PBC is commonly associated with a condition known as the Sicca syndrome. The sicca syndrome is characterized by dry eyes and dry mouth. Studies have shown the prevalence of sicca syndrome in PBC to range between 72-100%. Therefore, it is common for PBCers to develop itching in the throat, eyes and ears.
Hugo Vargas, M.D.
1. 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.
2. 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.
3. 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.
4. 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.
5. 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 makesthe 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).
6. 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.
Howard Worman, M.D.
1a. Is amount of itching directly related to the amount of damage to the liver?
1b. 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.