Mayo Clinic Connect
I’ve recently been diagnosed with this disease and don’t know much about it. If you have info that may help please answer. I mainly would like to know how you cope with knowing it is not curable.
Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
To my understanding, it is not curable. But it is manageable. Be sure to see a good Gastroenterologist, since they are familiar with the treatment.
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Thank u Rosemary. I have a liver disease specialist and a good gastro dr who has put me through many tests with the pill cam last week. I think he is looking for bleeding in the small intestine. The liver specialist said I have had it for many years and only now are having symptoms of tiredness and itching. I am on the Ursodiol and he did explain that it could slow down the progression. I’m just so shocked since I thought cirrhosis came from alcohol abuse which I didn’t do and no one in my family has ever had it. I think I’m just surprised to know that I am at stage 2 without even knowing I had it and I do not expect at my age I would be eligible for a transplant. Of course no dr can tell me how many more years I have but I would like to know the statistical info on the progression after stage 2. Is it possible to have many many more years left or maybe only two. Sorry if I sound depressing but I am still in shock.
It sounds like you are already in good a good place with both a liver specialist and GI. I am not familiar with the stage 2 label. It sounds like your doctors are on top of your diagnosis and treatment. And that is good for you! Like you, many people do not realize that they have a liver condition until it acts up or is discovered by accident. Mine was discovered when my doctor examined in routine labs. And then it took a while to find an accurate diagnosis. Your fears and questions are an exact echo of what I experienced. My advice is to gather information: Mayo Clinic, American Liver Foundation, and other respected sources like Cleveland Clinic, Johns Hopkins are some that I recommend. Make a list of questions and take them to your doctor for answers. Do you have a spouse or a friend who can go to your appointments with you? I have heard that people with PBC who take Ursodiol have had good results with it. That is what my girlfriend takes.
How often do you see your doctor for follow up? Rosemary
Liked by Colleen Young, Connect Director
@jackieg I want to add the following information for you. I did NOT have the same liver disease that you have. And so, my progression to transplant (liver/kidney 2009) is NOT something that you should assume will happen to you. I will be sharing thoughts and experiences with you as someone who has experienced liver disease. All liver diseases share some of the same bothersome symptoms. And can be are equally frightening. I am here to support you.
When I was diagnoses, it was the most frightening thing that could have happened. Fears and questions consumed my thoughts. My wonderful doctor told me that he would take care of me and direct my care. He also added that if I progressed toward transplant, that he take care of that. He told me to take care of myself by eating healthy, getting exercise, taking my meds, keeping appointments, and to call him with any questions. That is my advice to you. Rosemary
Hi @jackieg. I want to add my welcome to Rosemary’s. Glad to have you join the Connect community.
I’m happy to introduce a few other Connect members to this conversation about PBC. Please meet @ageorge714 @lorettanebraska @tiffanyandrews @bobbutler @mrsdeecee.
Jackie, you may be interested in reading this discussion about PBC and itching https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-primary-biliary-cirrhosis-5-yrs-ago-i-have/
Thank u so much for u sharing ur story. It does help to be able to talk to someone who knows what one is going through. I feel much better already. Take Care
Thank u for ur post. It does help to learn from people going through the same thing, This is all new to me and I’m glad to be a part of the forum.
My disease was found because my blood work at my primary dr was always high. I saw her every 3 to 4 months for blood work for diabetes. I’ve had so many tests such CT scans, liver biopsy, endoscopy, colonoscopy, and a few days ago swallowed the pill cam. I have a local gastro dr and a liver transplant specialist but of course no one knows how fast it will progress. It’s good to hear the meds have helped patients bc that is what was prescribed for me. I just saw the specialist last week for more blood work but will mainly be seen locally by my gastro dr. I feel they will take care of me and I will do what they tell me to do. Thank u for the links. I will be doing a lot of reading. How long has ur girlfriend had PBC.
Jackie, what was the pill cam like? Fascinating technology. Are you a candidate for transplantation? You may be interested in following discussions in the Connect Transplants group https://connect.mayoclinic.org/group/transplants/
The pill cam was unbelievable to me. The camera was in a capsule case that u swallow. Not as hard to do as I thought it would be. Then they put a belt with a monitor around ur waist and make sure the camera is working. I had to wear it for 8 hrs and watch to see a blue light flashing which is the camera moving its way through ur small intestines inking every second as it takes pictures. I had to make sure it stayed on my belly button the whole time. If it stopped blinking then I’d have to go back to office bc that would mean it came out. I didn’t want to start over so I came home and was afraid to move. I felt like I was in some kind of sci-fi movie. Didn’t really know what to expect. Lol. All went well and they took it off after 8 hrs. I do distinctly remember her saying it cost $5000. I believe I passed it the next morning since I saw something silver in my stool. It was painless test with results in 2 or 3 weeks. It’s funny to me now. Didn’t know if it would blow me up or what but all is well. U r right technology has certainly come a long way.
Liked by Colleen Young, Connect Director, Deena
Oh they haven’t mentioned transplant and at my age I can’t imagine they will. I’m a young 70.
Liked by Deena
How do u feel. Can u tell if ur disease has progressed. What meds do u take.
Stay calm stress is bad watch your diet low fat exercise and be kind to your liver a cup of hot water with lemon is the best in am they are making strides I have since 09 try to cut sugar aka carbs out no processed foods lots of vegis and fruit organic and free range I learned alot from Paleo anti immune diet would be my honor to help you but tired in NY I will leave you a post tomorrow I do know a lot of this disease you can live a long healthy life if you take very good care of you body and mind stress kills !
You are lucky to find such a great doctor!Sounds like your in great hands ! Very happy for you Im so tired will share in am have pbc and others problems have some formal medical schooling ànd hope to help and be heped good nite and bless us all Dee
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