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Newly diagnosed PBC-

Autoimmune Diseases | Last Active: Dec 9 6:45am | Replies (29)

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@sdib

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?

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Replies to "I have not officially been dx yet and have appt with Mayo coming up. I am..."

Hello @sdib. I'd like to add my welcome to @becsbuddy. You mentioned you meant to post in the PBC discussion, so I moved your comment to the discussion "Newly diagnosed PBC" - https://connect.mayoclinic.org/discussion/newly-diagnosed-pbc/.

Here you will meet @nonak, @irisjolie, @kaydee01 and @lbo615 who have all discussed their journey with SBC, diagnosis and treatment.

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.

I have had elevated AST and ALT numbers for over 20 years. My Drs just swept it under the rug as fatty liver. Then four years ago I was hit by severe fatigue and an enlarged spleen. Again my Dr said it was just fatty liver. Then a little over a year ago I had to have my gallbladder removed and a colon resection. The surgeon noticed that I had severe cirrhosis. Soon after surgery I got an appt at Mayo which has been a blessing. It turns out I have had PBC and autoimmune hepatitis which is hereditary, if my diseases had been diagnosed much earlier it would have made a huge difference for me. Ursodiol for the PBC has helped tremendously but I still will need a liver transplant at some point. Always push for answers. We know our bodies.