PBC Alliance

The Mission of the PBC Alliance is to Care for the needs of PBC patients by Advocating for new technology and treatment,

funding Research, and to provide Education for PBC patients, medical professionals and the community.

We will soon post information on upcoming PBC Alliance support group meetings.

Please visit us again for updates!

PBC Alliance Greetings!

With a strong desire to offer an event of interest for the PBC Alliance, we extend an Open Invitation to all PBC patients and PBC Alliance members to contact us with topics you want to learn more about and/or activities you would like to be part of. We also invite you to become part of the PBC Alliance Planning Committee.

Please contact Joan at  mailto:joan8@centurytel.net or 417-249-0340.  We welcome and look forward to your input!

What does it mean if you test positive for both ANA and AMA at the same time. I also have no symptoms of any problem.
My ALP is 154 (end of normal range 129) and my GGT is increased also.
Thank you for your response

“You ask an interesting question about ANA and AMA, with a mildly elevated alkaline phosphatase and an elevated GGT. ANA stands for anti-nuclear antibody and is seen in high titers in some patients with systemic lupus erythematosis (SLE), an immune-mediated disease that can affect multiple organs (joints, kidneys, etc). ANA can be positive in patients with autoimmune hepatitis, an immune-mediated inflammatory disease of the liver. Also, ANA can be positive when there is no disease present at all. So, it is important to put these types of results into a proper context.
AMA stands for anti-mitochondrial antibody and is seen in patients who have primary biliary cirrhosis, a chronic liver disease that affects the microscopic bile ducts in the liver. But again, AMA can be seen in the absence of any liver disease, although I feel that AMA is a bit more specific than ANA.
Finally, we sometimes see patients who have both a positive AMA and ANA, and sometimes they have overlapping features of both AIH and PBC. In most of these situations, liver biopsy is an important diagnostic tool to sort out these various liver conditions. Hope this helps somewhat.”  Dr. Bruce R. Bacon

My gastroenterologist prescribed statin Livalo because my cholesterol is high. My question is can someone with PBC take a statin?  I am fearful of the side effects as it is – but the Livalo website itself says “DO NOT TAKE IF YOU HAVE ACTIVE LIVER DISEASE”. Do you have any advice? Thank you.

“Statins have been rarely associated with liver enzyme elevations but there is no medical evidence to support the statements that statins should not be used in people with liver disease. We often here these statements on TV ads for statins and find them in the print ads too. This issue has been studied extensively over the past 5-10 years and there has been no findings to indicate that we should be worried in terms of liver problems.”  Dr. Brent A. Tetri

I am wondering if pbc can cause muscle twitching?

“We are not aware of any association between PBC and muscle twitching”  Dr. Brent A. Tetri

I am male and had a positive AMA test, and a biopsy with no signs of the disease. Had a CAT scan too. After all that, both my Gastroenterologist and my GP says its a false positive. Is their such thing as a false positive on an AMA test?

“A positive AMA (anti-mitochondrial antibody) test cannot really be considered a false positive because we don’t have good data on what happens over years to people with this positive test but no evidence of PBC. The first question is why the AMA test was performed. If the alkaline phosphatase is elevated, then a liver biopsy should be considered to further assess the possibility of primary biliary cirrhosis, or PBC. Note that having this disease does not mean that a person has cirrhosis, it just means that it is possible for it to progress to cirrhosis if left untreated. If the alkaline phosphatase is normal, then it and the other liver enzymes (ALT and AST) should be monitored at least annually. If increases are noted, then a liver biopsy should be considered at that point.”  Dr. Brent A. Tetri

I’ve recently been diagnosed with PBC, stage 2, with a positive AMA and liver biopsy. My gastroenterologist started me on Ursodiol 250 mg three times a day. He said it would take about four months before we know if it is working by my lab results. I live in the greater St. Louis area and I wonder if I should be followed by SLUH? I feel that a teaching hospital may b3e a better choice for me. Thank you for your thoughts.

“It sounds as if the diagnosis is accurate with the positive AMA and a consistent liver biopsy. The usual dose of ursodeoxycholic acid should be 13 to 15 mg per kg per day in divided dose. We would be happy to see you at the SLU Liver Center. We follow many patients with PBC.”Dr. Brent A. Tetri

I am a 56-year-old man with PBC. Everyone in my family on my father’s side died from liver disease.  I have a very difficult time with lack of energy. I sometimes catch myself falling asleep in my chair. I could lose my job because of it. I am just always fatigued. I am taking Ursodiol for my PBC but is there anything I can take to help me with fatigue?

There are so many things on the web but I don’t want to take something that makes my PBC worse. I also can’t seem to stop gaining weight even with diet and exercise.  Any suggestions would be helpful.

“The fatigue of PBC is well known and there are no approved treatments in this setting. There are medications that can b3e used to increase a person’s level of wakefulness but whether this approach would be appropriate for you would be a decision for your primary care provider. PBC is not known to be worsened by these medications.

Weight gain as we get into our 50’s is very common and indeed frustrating. The beset and healthiest approach is lifestyle modification that includes focusing on eating healthy foods in reasonable portion sizes while avoiding fast foods, sugar sweetened beverages and restaurant portion sizes. Exercise should be a mix of aerobic activities and strength training on a rregular basis. you can search the internet for the Harvard Healthy Eating Pyramid for some excellent and specific advice.”

My wife is 63, was diagnosed with auto-immune hepatitis 6 years ago and has severe cirrhosis. She currently takes Azathioprine (generic for Imuran) 50 MG tablet, two tablets, once a day and it is doing pretty well. She sometimes seems depressed and cries when she worries about her condition or when her family asks how she is doing. Our primary care physician has suggested that a mild anti-depressant might help. She prescribed 25 MG Sertraline HCL (generic for Zoloft) one tablet daily. We are somewhat concerned that it might do more harm to her liver after reading the patient information data provided by the pharmacy. She is really handling her depression (if that is what is wrong) pretty well other than the occasional tears. Question: Is her use of the Sertraline worth the risk? She has not taken any of it yet. Thanks?

“We are happy to hear that your wife has done well with her cirrhosis for the past 6 years. It is certainly stressful for a person to know that they have such severe organ damage, but the fact that she has done this well for 6 years on azathioprine is a good sign that she will continue to do well.  Most medications are broken down (metabolized) by the liver and when people have cirrhosis, this process can be slowed. This only means that with cirrhosis, people often need relatively lower doses of medications.  Just about any medication has been associated with causing liver damage in rare circumstances. The same is true for sertraline. With sertaline and most medications in general, significant liver damage can be prevented when the medication is stopped as soon as there is concern that it might be causing a problem. The symptoms to look for include jaundice (yellowing of the whites of the eyes and skin), dark urine, severe new tiredness, itching of the skin or loss of appetite. If you become concerned about any of these, be sure to discuss this immediately with your physician. The times we see the most serious medication-induced liver damage is when these early signs and symptoms are ignored.”  Dr. Brent A. Tetri

I was “officially” Diagnosed with PBC in 2009.  Prior to that, I was diagnosed with NASH. I have had T’s, US’s, Liver biopsy, labs q 3 months, ANA, DNA, PT-PTT, IMg, SED rate, Copper levels, etc. IMg was over 80.00.  The copper level was “through the roof” the Hepatologist said. I can’t remember the number. Alk Phos was 795, and the ALT and AST were both 200 and higher. Liver biopsy confirmed PBC – stage 1. The US showed fatty liver with infilltrate, swollen liver, mild duct fibrosis, etc. I had to have my gallbladder removed in 2010. We tried to keep my gallbladder; but, were unable to do so. I also have Gluten intolerance, Sjorgens syndrome and CREST syndrome.  I take many medications, which include:  Ursodiol, Rifampin and Reglan. My right side hurts frequently, and feels “hard” – if that makes sense. I  take the Reglan b/c I also have gastroparesis. The Rifampin helps with the aggravating itching. I know that the fatigue is not completely understood. I just have a hard time with feeling as though I am dragging around cinder blocks from all of my extremities. I also have OSA.   In your opinion, is it possible that the OSA is exacerbating the fatigue? I have an appt with my Hepatologist in a few days. I love my PCP and my Hepatologist.  I just thought I would ask for your opinion and thank  you for any insight?

“We are certainly happy to hear that you are in the care of a good hepatologist. Your situation is clearly very complicated and without sitting down with you, going through the details and looking at your liver biopsies, we really are not in a position to comment on your diagnoses and treatment. Fatigue is a known side effect of chronic liver disease, especially PBC. Similarly, OSA is a common contributor to fatigue. There are some data to suggest that OSA might contribute to liver damage in NASH, so it’s not unreasonable to be thinking along these lines. We wish you the best is sorting this out.”  Dr. Brent A. Tetri

I was diagnosed with PBC in 1999 (stage 1), biopsy in 2005 showed progression to stage 2, third biopsy in 2010 showed stage 3/4 with overlap of AIH. Endoscopy on 1/2013 showed I have portal hypertensive gastropathy with cherry spots in gastric area. My liver labs are stable. Can you tell me what is the prognosis in terms of how fast it will continue to progress, develop complications, or listed for transplant?

“We agree that your situation is very worrisome since you have well documented progression of you liver fibrosis since 1999. It is possible that treating the autoimmune hepatitis component of your liver disease will slow or even stop the progression, but this can vary from person to person. Without such a response, you could start to develop complications of cirrhosis over the next 1-5 years. Unfortunately, we cannot review your MRI images without seeing you in clinic. We hope that you understand”  Dr. Brent A. Tetri

I’m hoping someone can help me out. I’m a 22 yr old seemingly healthy male. About a year ago I had abnormal lfts. I was referred to a G.I. and tested for pretty much everything from what he told me. All which were negative test. I’ve also had ultrasounds done. CT and MRI. As well as a hyda scan. All showed nothing. I was then ordered to have a liver biopsy. The nurse called me and said they are puzzled and they want to send my biopsy to a “better” lab and want me to be tested for ANA or AMA. I guess to rule out PBC? I’m just lost and scared through all this. I can’t seem to get a straight answer and they act like they really don’t know what’s going on. I respect their work and like my doctor. Can you help me out? Maybe I’m ok? Thanks for any help you can provide.

“Although we have a lot of good blood tests to identify specific causes of liver disease, sorting out the causes of elevated liver enzymes can be difficult at times. It sounds like you are in one of those situations. It is always a good idea to get a second opinion on the interpretation of a liver biopsy when the answer is not clear. Diseases such as Wilson’s disease can be particularly difficult to diagnose and may require a number of different tests such as blood tests, a liver biopsy, a 24 hour urine collection and even an eye examination by an ophthalmologist.”  Dr. Dr. Brent A. Tetri

My wife has liver PBC stage 2. diagnosed in 2007.  She is 34 yrs old, we have 2 children ages 13 and 5 and I’ve noticed within the past 2 years that she has become withdrawn.  She seems lost in her own mind?  She seems not to care much about me or our kids.  She’s kind of  heartless and has no feelings anymore. I don’t know what to do anymore. Is this part of her PBC condition?  I help her out around the house I’m good to the kids, and work hard to support her in so many ways.  I never get a thank you.  She’s still very itchy.  She takes her meds.  She also no longer wants to be touched.  Any information would help me understand. Thanks.

“For most people, living with PBC is as simple as taking ursodiol and having regular checkups. However, for some people living with a disease that can cause fatigue and itching with a risk of progressive liver disease takes an emotional toll leading to depression and other difficulties. She should see her liver specialist and have a frank discussion about these problems. She may benefit from seeking additional help. You certainly seem to be on the right track in trying to be supportive.”  Dr. Brent A. Tetri