Connect
← Return to Primary Biliary Cholangitis and Autoimmune Hepatitis
Discussion
Primary Biliary Cholangitis and Autoimmune Hepatitis
Transplants | Last Active: Oct 3, 2021 | Replies (72)Comment receiving replies
I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!
Replies to "I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed..."
@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.
Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.
Connect
Hello @jlsk1974, welcome to Mayo Clinic Connect. There is another active discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.
> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
-- https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
You mentioned wanting to know what questions to ask. There are some good tips on seeing a new specialist or doctor by @roch here:
— https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
I also found a few sites that are good sources of information on Primary Biliary Cholangitis that may be helpful.
National Organization for Rare Disorders:
-- https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/
American Liver Foundation:
-- https://liverfoundation.org/for-patients/about-the-liver/
@jlsk1974, asking questions and preparing for your upcoming appointment is a great idea. Do you normally write down a list of questions for your doctor or upcoming appointments? I have done this for appointments when I did not want to forget to ask a question.