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David Bernstein, M.D.
Question 19:
Can you describe the manner in which a person finally dies from cirrhosis? If a person chooses, can he/she be sedated deeply and allowed to die without enduring days or weeks of encephalopathy and delusion?
Answer 19
People with advanced liver disease usually die from a complication of cirrhosis but not the cirrhosis itself. The most common cause of death is infection. The infection may be as common as the flu, pneumonia or a urinary tract infection. People with decompensated liver disease are unable to fight off infection as well as those without liver disease, despite the use of antibiotics. Another common cause of death is massive bleeding from esophageal or gastric varices. Primary liver cancer, which is a result of cirrhosis, can also lead to death but the cause of death is usually infection or bleeding.
Luckily, people with advanced liver disease usually reach the fourth stage of encephalopathy or coma prior to death. People in a coma do not feel discomfort. Careful planning is required prior to ever reaching such a point so that family members can follow a patients wishes and advanced directives. Euthanasia is not permitted in the United States.
Question 20:
Why do people with GERD suffer from chronic cough? Are there any other problems related to chronic cough and PBC?
Answer 20
GERD can lead to many effects outside of the esophagus and stomach. Gastroesophageal reflux commonly leads to chronic cough and hoarseness. The refluxate or gastric juices pass through the esophagus and enters the trachea and lungs and causes irritation. The irritation leads to coughing. GERD has even been felt to be a possible cause of asthma in some patients. This cough is treated with anti-acid medications.
There are several chronic pulmonary conditions associated with PBC. PBCers can develop interstitial pulmonary fibrosis and those with either Sjogren's syndrome or scleraderma can also develop a chronic cough.
Question 21:
What, if any, are the differences between URSO and Actigall? Once a PBCer has started taking URSO or Actigall, will we need to take it for the rest of our livers or will it depend on the LFT's?
Answer 21
URSO and Actigall are both compounds comprised of the bile acid, ursodeoxycholic acid. For most purposes, these two medications are basically the same. Although both are usually tolerated without difficulty, each individual medication may have certain side effects in any given patient. Therefore, the only reason that I use to change from URSO to Actigall is when people complain of side effects such as nausea, diarrhea or headache. It is important to remember that URSO is the only one of the two medications currently approved by the FDA for use in PBC. Once people are started on either URSO or Actigall, they should expect to be on these compounds for life, regardless of the liver enzymes. It is important to remember that having normal liver tests on these compounds does not guarantee that they are working. Therefore, repeat liver biopsies are periodically recommended if the initial biopsy did not show cirrhosis. This may change as new medications are developed in the future.
Question 22:
Is it recommended for patients with PBC to have the Pneumonia vaccination? What about hepatitis A and B vaccines?
Answer 22
I generally recommend that my PBC patients take the pneumonia vaccine. I also encourage both hepatitis A and B vaccination if there is no previous evidence of exposure to these viruses.
Question 23:
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 23
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.
Question 24:
What GI problems can result from taking Fosamax for extended periods of time? Also, can a teaspoon of Cod Liver Oil deliver the vitamin D needed for the body and the absorption of calcium when taking Fosamax?
Answer 24
In general, Fosamax is a safe medication. It has, however, been associated with the development of esophageal ulcers and bleeding from these ulcers. The risk of these complications is greater in people with abnormalities of the esophagus such as strictures or varices. It is important to take Fosamax with plain water, not coffee, tea, juice or mineral water and not to lie down for at least 30 minutes after taking Fosamax.
Fosamax may also cause abdominal pain, worsen gastroesophageal reflux disease, lead to increased flatulence and lead to the development of nausea and vomiting.
Fosamax use may lead to the development low levels of calcium in the body. It is important to ensure adequate calcium and vitamin D intake while on Fosamax. There are many sources for supplementing vitamin D intake. One teaspoon a day of cod liver oil contains 340% of the recommended daily allowance of vitamin D. Although it makes sense that cod liver oil use can deliver the vitamin D needed while on Fosamax therapy, there are no published scientific studies performed to date to substantiate its use.
