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Questions 13 - 18
13.) Do you recommend those with PBC take vitamins? Would it be easier on the liver to take children’s vitamins?
Answer
People with PBC who develop advanced disease may develop deficiencies in the fat-soluble vitamins (vitamins A, D, E, and K). In these patients, I recommend specific vitamin replacement dependent on the needs.
In PBC patients who have not developed advanced liver disease, I recommend a multi-vitamin without iron and copper each day. I also recommend anti-oxidant use such as vitamin E in most patients. Children’s vitamins can be as effective as adult vitamins. I believe that the important item to look for is the presence of copper or iron in the vitamin. If these are there, the vitamin should be avoided.
14.) How important is diet to a person with PBC? Do you recommend 3 meals a day or smaller more frequent meals?
Answer
I firmly believe that you are what you eat. A well balanced diet is essential for good health. I feel that three meals a day is a good way to eat. This system provides some structure into eating and helps prevent constant snacking that may lead to eating the wrong foods. I also recommend not eating within four hours of going to sleep.
15.) What could be the cause of craving salty foods? I know PBCers are supposed to lower their salt intake, which I immediately did on diagnosis?
Answer
One of the most common causes of salt craving is dehydration caused by not enough fluid intake. It is important to limit one’s over all salt intake to prevent fluid overload and heart disease. However, salt craving is usually a sign of the body needing fluids. Salt helps the body hold on to water. The best way to avoid salt craving is to drink plenty of fluids.
16.) I hate the taste of plain water and in its place drink herbal or green tea with lemon or honey. Is this taking the place of my daily water requirement or is 8 glasses of plain water still required?
Answer
The answer to this question is dependent upon the amount of tea which you drink. You should ingest 8 glasses of 8 ounces of fluid a day. Whatever tea you drink is made up of water and counts towards this fluid goal. If you drink 8 glasses of 8-ounce tea, you have met your fluid requirement for the day.
17.) I have always been told that PBC will not actually improve, but the progress can only be slowed by Actigall or URSO. Besides medications, can anything else slow the progress of PBC? Have you observed improvement in the liver condition in subsequent biopsies that would indicate a turnaround rather than simply alack of progress?
Answer
The goal of treatment with URSO or Actigall is to suppress or reverse the underlying process. URSO has been shown in studies to improve the inflammation seen on liver biopsy but it does not seem to have an effect in reversing fibrosis. It has, however, been shown to slow the progression of disease and delay the need for liver transplantation. I personally have not observed significant improvements on serial liver biopsies in many patients but I have noted the lack of progression on therapy.
Unfortunately, no other medications, including health food store and natural herbal products, have been shown to slow the progression of disease.
18.) What would be the most important advice you would give a person newly diagnosed with stage 3 PBC?
Answer
The most important advice I would give this person is not to panic. My next recommendation would be to find the doctor in your area with the most experience in PBC and seek his/her opinion of your case. Although PBC is not uncommon, most practitioners have not had a lot of experience caring for this disease. Once you find the right caregiver for you, you can address the disease in a calm fashion. Once this person is found, I recommend that you learn as much as possible about the disease and ask questions of your physician. Finally, I feel that support groups made up of peers are extremely helpful in the overall care of a PBCer.
