Newly diagnosed PBC-

I have not officially been dx yet and have appt with Mayo coming up. I am 2 years post hospitalization for loss of use of my legs, have peripheral neuropathy and myopathy, all caused by autoimmune condition. My Rheumatologist sat for 2 years on it and only ordered basic bloodwork. She just ordered liver tests a few months ago and I have PBC (by the numbers anyway) and a very high GGT. The fatigue is killing me but the ascites is worse. I have been complaining about stomach bloating and weight gain for over 6 months. I'm now up about 50 lbs quickly, with a large and hard abdomen. I know what the dx is, but with this much ascites, I am very scared about how far this has gone and what I should expect to hear. I have read ascites does not usually show until later in the disease. Any ideas or thoughts? What you went through at dx?

I have not officially been dx yet and have appt with Mayo coming up. I am 2 years post hospitalization for loss of use of my legs, have peripheral neuropathy and myopathy, all caused by autoimmune condition. My Rheumatologist sat for 2 years on it and only ordered basic bloodwork. She just ordered liver tests a few months ago and I have PBC (by the numbers anyway) and a very high GGT. The fatigue is killing me but the ascites is worse. I have been complaining about stomach bloating and weight gain for over 6 months. I'm now up about 50 lbs quickly, with a large and hard abdomen. I know what the dx is, but with this much ascites, I am very scared about how far this has gone and what I should expect to hear. I have read ascites does not usually show until later in the disease. Any ideas or thoughts? What you went through at dx?

I’m sorry you’re feeling so poorly but I think you’re right this is unlikely to be ascites. Can you further explain what is happening with your liver enzymes? Did you have a positive AMA antibody test as that is a key marker when PBC is on the table. Is your ALP highly elevated along with ALT, AST and GGT? Elevations in all these tests plus a positive AMA can be indicative of PBC but a hepatologist will run more tests for confirmation. Most people will routinely get a common blood test called a metabolic comprehensive panel that tests organ function and that includes your liver function tests. Any number of doctors order this test all the time and it’s probably the most common blood test ordered. Maybe you can look at MyChart under results or even at the lab you routinely go to look at your results and trends. That will give you a history of how long your liver enzymes have been abnormal. It’s very concerning that you would have ascites after just learning you have a liver disorder whatever the type. Ascites is a key indication of advanced liver disease with cirrhosis and that is something that typically takes years of serious untreated disease to advance to. Advanced cirrhosis which is the later part of liver disease may indicate the need to go on a transplant list- it’s that serious. Almost surely you would have known well in the past if your liver disease had gotten this severe. I have had PBC for years and have limited fibrosis which is the lead up to cirrhosis. If someone had 50 lbs of abdominal fluid that would be an emergency and causing shortness of breath. If you had cirrhosis, that also causes some serious blood abnormalities outside of liver enzymes and your doctors would have flagged long ago and you’d likely be jaundice well before now. There are tests used to measure how stiff the liver is from scarring called fibrosis. A fibroscan is probably the most common. Once you pass the 4 levels of fibrosis it’s considered cirrhosis. Let’s hope this is not ascites. There are various GI disorders that can cause abdominal bloating. Good luck.

Thank you. I have had all of the above elevated for over 2 years, almost 3. My GGT is about 500 or so, maybe not too high but high. Antibodies triple (something there with cytoplasmic staining), and also my M2 was positive. My ESR has been triple, quadruple what it is supposed to be for almost 3 years. The Dr. did nothing. I am pretty sure with those positive outcomes and the numbers, that it is PBC. I have never gotten blood work regularly a all. But I do recall a couple times when I was sick or whatever, some being high and having it brushed off. I had several bouts of pancreatitis over 10 years ago that the Dr. attributed to meds, so I changed and never had again. Gallbladder was removed. That's all why I am a bit nervous. I can't even get a gastro to call me back in this darn city (Syracuse, NY). I've been waiting 2 months on the referral once my Rheum finally decided to do something. So who knows when an appt is going to be. So I took it into my own hands and scheduled with Mayo hepatology.

Sorry, I replied after Cindy and it was meant for sb4. It is equally applicable to Cindy's reply though.
@Cindy - I have been thrown away, brushed under the rug, looked at like I have 3 heads and told there is noting wrong with me'. I stopped walking 2 years ago and it was caused by an "autoimmune disorder" but they didn't know which one. I was never tested for PBC (meaning M2, GGT or those things, liver always tested and always out of whack). My Rheum did NOTHING. Have appt, chat, have blood taken, schedule appt.; show up next scheduled appt., chat with no mention of BW, have blood taken, schedule appt. X TWO YEARS. I let it go too long. I went to Mayo for a review, but the prob is they only did neurology - well I KNOW I have polyneuropathy and myopathy. They did not bring in Rheum., GI or hepatology to consult and I was very upset! My Rheum recently referred me to GI but as stated above, they have not responded. Sooo, I set up Mayo myself with Hepatology in Jacksonville. I really think it is the ascites that has put on 40-50 lbs (which I've been complaining of for one year) and the reason I cannot breathe, meaning deep breath in because you feel very full. That's why I'm pretty nervous about what I am going to hear. I am afraid I missed the boat on drugs that would delay progression.

@cindy358 and @sdib @sb4ca Just to let you know about the Mayo Clinic’s care network. It is a group of hospitals that follow Mayo Clinic’s philosophy and standard of care. You might check them out.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
These hospitals are all over the country. Do you think you might look for care at one of hospitals?

Even at Mayo, didn't they do general labs with liver enzymes? When I went, the IMS sent me to multiple specialist's as tests showed one thing or another and not associated with my primary reason for going. Maybe Mayo works differently now but it seems unlikely they would ignore basic lab tests. Were you at Mayo when you had this shortness of breath? Rheumatology wouldn't treat liver disease. At minimum you should have been referred to a primary doctor and maxium a hepatologist. I hope you're wrong that you have such advanced liver disease. In your shoes I would find a good primary care physician to direct your care. That is what they are good for. You should be able to get in with a primary within a couple weeks.