We wish to thank all the members on our Doctors Panel, for giving us their time answering PBCers questions. We greatly appreciate all they do for us.
The following questions were answered by:
Melissa Palmer, M.D.
Question 1
I have read about Alevera juice to boost my immune system. Do you know if products like this are harmful to PBC patients? Should PBCers try to boost their immune system or will it be harmful? Do you know if Coral Calcium will help or harm the liver?
Answer 1
Aloe vera is a plant that can be divided into two basic forms - latex and gel. Aloe gel is often tauted as a treatment for wounds and skin disorders. Aloe latex is most often used as a laxative. However, it is also tauted as an immune system stimulator in addition to a treatment for numerous medical conditions including arthritis and diabetes, and AIDS. There have never been any studies demonstrating that the use of Aloe, or any other immune system booster is beneficial to people with PBC. Furthermore known side effects of aloe include diarrhea, abdominal pain and electrolyte disturbances. And, inducing diarrhea may further worsen some vitamin ( A,D,E, and K) and mineral (such as calcium) deficiencies that may already be present in some people with PBC. Since people with PBC are prone to severe bone problems, including bone loss, bone pain, and bone fractures, it is important to supplement their diets with calcium. Coral calcium is obtained from coral reefs and is often proclaimed to be a superior form of calcium. However, there have not been any conclusive studies to prove that this form of calcium is any better or worse for people with PBC (or any other liver disease) as compared to any other calcium supplement.
Question 2
I currently take 1000mg of Cod Liver Oil a a day, in a bid to improve my joint stiffness and pain. Is it ok to take with URSO? Does it have any contraindications in PBC?
Answer 2
Cod liver oil is the yellow-colored oil extracted from the liver of a codfish. Since this oil is rich in vitamin A and D it was originally used to treat rickets and was used as a nutritional supplement especially for children. It is also a good source of omega-3 fatty acids. They are absorbed by the body only with the help of fats or bile. In people with PBC, fat-soluble vitamins - A, D, E, and K, may be poorly absorbed- (malabsorbed) by the body due to impaired bile acid delivery to the duodenum (first portion of the small intestine). In such cases, vitamin supplementation is necessary. Vitamin A deficiency is noted most commonly, occurring in approximately 20 percent of people with PBC. It occurs more frequently in advanced stages of disease, when cholestasis is worse. Occasionally it causes night blindness, but is typically asymptotic. People with PBC are advised to take 25,000 IU to 50,000 IU of vitamin A two to three times per week. Vitamin D deficiency is the next most common fat-soluble vitamin deficiency to occur. A vitamin D deficiency results in calcium malabsorption, which increases the risk of developing osteoporosis. Thus, vitamin D and calcium supplementation are recommended for all people with PBC. Some studies have shown that omega-3 fatty acids may delay the destruction of joint cartilage and inflammatory pain associated with osteoarthritis. Urso is taken with food so it is safe to take together in people with PBC.
Question 3
Is it safe for PBCers to swim regularly in chlorinated public pools? Is swimming a safe exercise for PBCers especially those diagnosed with osteoporosis?
Answer 3
People with PBC should take up both aerobic and weight-bearing exercises, as they each play a different role in fighting liver disease. Aerobic exercise trains the heart, lungs, and entire cardiovascular system to process and deliver oxygen more quickly and efficiently to every part of the body. It's the kind of exercise that gets the heart pumping. As one becomes more aerobically fit, the heart won't have to work as hard to pump blood to the rest of the body, including the liver. The pulse will begin to slow down, making it easier for the liver to send back to the rest of the body the blood it has just filtered. The benefits of being an aerobically fit person include an overall improved energy level, which translates into decreased fatigue. Swimming is an excellent and safe aerobic exercise for people with PBC and osteoporosis. Swimming regularly in a chlorinated public pool is safe. Chemical disinfectants contained in pool water such as chlorine may result in the formation of potentially hazardous chemical by-products. However, it has been concluded that the risks to the body from these by-products at the amounts at which they are present in pool water are very small in comparison to the risks associated with inadequate disinfection or the health benefits reaped from swimming. In fact studies have shown that the lifetime exposure to disinfectant by-products from swimming pools is typically less than from drinking water! Weight-bearing exercises build up both bones and muscles. People with PBC need good strong bones because they are prone to osteoporosis. Weight training is the best way to fight against this, as stronger muscles equal stronger bones.Thus, it is also important for all people with PBC to incorporate weight-bearing exercises into their daily exercise routines. Of course, if already diagnosed with osteoporosis it is important to check with your doctor which specific weight-bearing exercises to avoid for your particular degree of bone loss.
Question 4
Can PBC cause pain in the right upper quadrant area of the abdomen? My doctor has never heard of PBC causing pain in this area and says it might be from the sphincter of oddi. I have heard many other PBCers experience this same type pain.
Answer 4
Most people with liver disease expect to feel pain over their liver. This type of pain is known as right upper quadrant pain or tenderness (RUQT). However, RUQT is rarely due to chronic liver disease. RUQT occurs most commonly in the acute stages of liver disease, such as in acute viral hepatitis. It may occasionally occur when one experiences a flare-up of a chronic liver disease, although these flare-ups are uncommon. It is most often caused by acute inflammation, irritation, and distention of the liver's surface. Otherwise, the liver is rarely tender.
If pain in the region of the liver is experienced, other causes must be considered. For example, it may indicate gallstones, which happen to be associated with many liver diseases. Or it may indicate liver cancer-also known as hepatoma or hepatocellular carcinoma (HCC). Scar tissue from prior abdominal surgery- known as adhesions, is also a cause of abdominal pain. Intestinal pain must also be considered, as the right side of the large intestine lies in close vicinity to the liver. Many people claim that although they do not actually feel pain in the liver region, they experience a rather vague sense of "fullness" or an "awareness" of the liver. The cause for this is unclear. If a person experiences abdominal pain associated with swelling of the abdomen, ascites-the accumulation of fluid in the abdomen-must be considered. Ascites is associated with advanced liver disease. Other causes of abdominal pain include those related to the stomach, such as peptic ulcer disease and gastritis, which are not necessarily indicative of liver disease and are readily treatable when discovered.
The sphincter of oddi is is also located in the RUQ. This sphincter, or muscle, functions as a one-way valve that allows pancreatic and biliary secretions and enzymes to enter the small intestine to aide in the digestion of food, while preventing secretions to back-up into the rest of the body. When this sphincter does not function to becomes very tight and does not allow drainage of the pancreatic and bile ducts. This results in recurrent episodes of pancreatitis and RUQ pain. If your doctor suspects sphincter of oddi dysfunction a manometry would need to be performed to make the diagnosis definite and a sphincterotomy ( cutting the sphincter of oddi) is the treatment of choice.
Question 5
I have noticed several people are taking "milk thistle". My doctor has not wanted me to take any herbs etc. I have autoimmune hepatitis & I am taking prednisone. Also have pbc --ursodial for that. What is the milk thistle supposed to do & can you take it with prednisone.??
Answer 5
Milk thistle (also known as silymarin and its scientific name Silybum marianum) is an herb originally believed to help nursing mothers produce milk. Over time milk thistle became more well known for its effects on the liver. In 1968, it was found that the active ingredient in milk thistle is located in the seed, and that it consists of three components silybin, silydianin, and silychristin- now collectively referred to as the flavonoid silymarin. Silymarin is currently used in Europe to treat all types of liver disorders. In the United States due to the lack of FDA regulation, the actual percentage of biologically active silymarin in a given preparation of milk thistle is unknown.
The following claims have been made about milk thistle:
o Milk thistle may reverse liver damage in alcoholics.
o Milk thistle may reverse liver injury in patients with chronic hepatitis.
o Milk thistle may slow the advancement of cirrhosis.
o Milk thistle may improve the long-term survival rate among cirrhotic patients.
Studies done on milk thistle have concluded that although it may decrease liver enzymes this herb does not provide any benefit to people with primary biliary cirrhosis (PBC).
Due to the lack of controlled research on herbal remedies, the exact extent of drug-herb interaction is not entirely known. Many herbs may increase or decrease the action of conventional medicines. The interaction of milk thistle and prednisone has not been studied.
It is also important to remember that due to the absence of FDA regulation, it is possible that a totally different herb can be substituted for the one on the label. Furthermore, there have been reports that some herbs have been spiked with steroids, painkillers, tranquilizers, thyroid extracts or other substances to improve their effectiveness. Toxic metals, including lead and arsenic and even powerful heart stimulants (such as digitalis), the blood thinner warfarin, and the diabetic medication glyburide have been discovered mixed in with herbal preparations. And, some herbs have been found to contain dangerous microorganisms, such as staphylococcus aureus, escherichia coli (E. coli), salmonella, and shigella, each of which can make a person quite ill. Of course, the product labels, did not mention the addition of any of these adulterants, and all labels claimed to contain only "natural" ingredients.
So, until more studies are done, and the FDA approves more stringent regulatory laws on herbal therapies, it appears that your doctor is giving you sound advice.
Question 6
My mom was diagnosed as PBCer few months ago. The dietitian told her to reduce proteins intake - to eat meat/fish no more than twice a week.
Is this type of diet correct?
What diet is right for PBCers?
What vitamins should PBCers take?
Answer 6
Unfortunately, a person cannot expect to walk into the doctor's office and request "a diet for PBC." Such an across-the-board diet simply does not exist. Many factors account for the unfeasibility of a standardized liver diet, including variations in the stage of the liver disease (for example, stable liver disease without much damage versus unstable decompensated cirrhosis), in addition to one's other medical disorders even if unrelated to their liver disease, such as diabetes or heart disease. Each person has her own individual nutritional requirements, and these requirements may change over time. I am not quite sure about why the dietitian restricted your mother on meat and fish. As for red meat, possibly her iron levels were too high, or the fat content of meat too high? Most people with PBC have difficulty absorbing fat-slouble vitamins especially in the more advanced stages of the disease. Thus, supplementation with fat soluble vitamins - A,D,E, and K are necessary. Also, it is extremely important to take calcium and vitamin D supplementation.
People with primary biliary cirrhosis (PBC) often have difficulty absorbing fats. This is because the destruction of the bile ducts within the liver causes a failure to secrete the bile salts which are necessary to absorb fats. This can result in steatorrhea, a condition of fat malabsorption. Therefore, people with PBC should adhere to a diet low in fat.
People with primary biliary cirrhosis (PBC) generally have high cholesterol levels (sometimes in the range of 500 to 1,000 milligrams per deciliter) that are not attributable to dietary indiscretions. However, they are not at increased risk for heart disease or heart attacks due to these elevated levels. Gluten, a protein found in wheat, oats, barley, and rye, is often unable to be absorbed in people with primary biliary cirrhosis. An inability to absorb gluten, known as a gluten intolerance, occurs in the autoimmune disease known as celiac sprue. Celiac sprue typically causes diarrhea and weight loss. Celiac sprue is approximately ten times more likely to occur in people with PBC than among the general population. Treatment consists of eliminating all gluten products from the diet.
For more information about PBC please refer to my website www.liverdisease.com or Dr. Melissa Palmer's Guide to Hepatitis and Liver Disease".
END