If at all possible, see a knowledgable hepatologist
Only use trusted and reputable sources for information
Don’t google unless the article is current and from a reputable source such as The American Liver Foundation, Canadian PBC Society,The PBC Foundation, LivingWithPBC, Cleveland and Mayo Clinics.
PBC is not a death sentence.
Just take a breath. PBC is manageable. Most die with PBC - not because of it.
Eat healthy and keep moving - do whatever exercise you can.
Try to find a compassionate doctor who knows about PBC and you want a long term doctor-patient relationship with.
Look up all of the words you don’t understand or have never heard of - There is a glossary of terms in the PBC app
Stay calm...it will be ok.
Find support that offers what you are looking for
Written by
DonnaBoll
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Very often a gastroenterologist isn't familiar with PBC enough to treat someone for a long term relationship. If you are confident he can give you the care you need then I'm happy he can. Being a rare disease so many primary and GI docs just don't treat many people with this disease.
This is very true…my primary care doctor was also a GI and he knows nothing about liver diseases i.e. pbc and referred me to my hepatologist.
If available, good to choose an expert who is on the forefront of the new research, tools to manage pbc. Of course, also have to find someone who does not rush through appointments and also available to consult with as needed.
I am very grateful for the referral to my hepatologist. He is very responsive and very prompt about getting back to me. I have 2 doctors like that. They either get back to me the same day or the next day. Makes me worry less about things.
You are very fortunate to find someone who you feel confident with. Many of us with PBC usually start with a diagnosis by our primary or GI doc but are fortunate enough to be referred to a hepatologist. We just have to feel secure that they are knowledgeable about this rare liver disease. All the more reason for us to educate ourselves about PBC as much as we can from those reliable sources.
I was diagnosed by the hepatologist after he sent the biopsy slides to an expert pathologist at Columbia Presbyterian University for review to substantiate. I was put on urso right away.
Sounds like the very best plan for sure. I know of some of my members have had concerns that the pathologist who looks at their liver biopsy slides was not really knowledgeable in what to look for. It really makes a difference. We all need to be sure that we express to any doctor who does a liver biopsy that it's viewed by someone who knows what they're looking for. Getting on Urso right away is the key to keep the disease from progressing unchecked. I assume you have your liver enzymes repeated every 3-6 months. Good care and confidence in your doctor is so important.
Same here. I think of my hep as a “liver whisperer “. So compassionate, kind and calming. I spoke with his nurse Wednesday about a couple concerns regarding this new drug. He has scheduled a televisit with me to try and out me at ease. Love him.
I’m already mixed up on my days and for whatever reason was thinking this is Friday. Too busy to think straight. I talked to the nurse Monday and got msg yesterday that he scheduled the televisit.
First of all, I applaud any doctor who admits he doesn't know how to treat a particular disease. Knowing he couldn't give you the best care, he knew you needed someone else.
He is a very caring primary care doctor. He nagged me to get to the bottom of the issue. Kept insisting on a liver biopsy. I was too scared. So he said I know I wont convince you so I need you to go to the hepatologist so that he can convince you.
So I made the hepatologist appointment and my PCP discussed my case with him and sent over my medical history prior.
After I was diagnosed, my hepatologist gave him an update on me. My pcp called me to comfort me…told me while I have the pbc, at least it is being addressed and that my hepatologist will take good care of me. I was very touched.
Needless to say, during that time I was an emotional wreck. In hindsight I should have spoken to a therapist. It was so draining on me and the constant worrying.
I really am surprised as my gastroenterologist is all the things you state. Knowledgeable. Caring. Takes time with me to answer questions. Responsive also to calls. In the UK you don't get options to pick specific specialists unless you go private. SHE Donna Boll is my gastroenterologist and very upto date with new research etc.
I'm so glad you have found a doctor who you trust and feel can give you the care you need. Having a doctor who answers questions and responds promptly to calls is often not the case. I know we are very fortunate here in the US to have access, in most cases, to a hepatologist.
I appreciate your positive upbeat attitude about PBC but for some it truly is a death sentence. I started showing symptoms in 2010 but was not diagnosed until 2020. It has been four years now taking Ursodiol but have already advanced to stage 3. My liver enzymes were over 600 just last week… they just landed two new medications this year but the cost is over $12k for one month supply and my insurance will not cover them bc they are too new on the market. From every group I have been in, I’m told it’s not the disease that takes you but the complications that arise from it. This cannot be more the truth. This disease has affected my kidneys, pancreas, heart and brain. I never know which organ it’s going to affect next. Every article you read online only states that it affects your small bile ducts inside the liver but that’s not true. Every organ in ur hepatic system is connected so if one is damaged, it affects all the others putting strain on them and weakening their ability to function properly. This has led to weakened muscles, fatty deposits, memory problems, heavy brain fog, chronic fatigue, nausea, vomiting, night sweats, unexplained weight gain, fevers, very itchy skin, and the list goes on and on… this disease is brutal. There is no cure. There is only masks for your symptoms…
I am so sorry all of this happening to you. I, in no way, wanted to minimize how life threatening this disease can be. I got to the point where I needed a transplant after being diagnosed for 20 years. I surely would have died without one. It really gives us an insight into how life can change for us by having a disease we likely never even heard of before. Do you have other contributing comorbidities along with the PBC? I can't even imagine how scary this must be for you and having no control over any of it. Feel free to keep us up on how your doing. If I can help in any way, please feel free to send a private 'chat' here as well.
So far no other comorbidities though my dr does say PBC is one autoimmune that does not like hanging out by itself so there’s usually another autoimmune lying, waiting to be discovered… I just think they have such little understanding of this disease it appears there’s more than one autoimmune when in fact all the issues are related to just one… I have had heart failure, temporary diabetes, and infusions for toxicity. Like I said before, I never know how this disease is going to affect me next or which organ is going to be under strain. I am very happy for you that u were able to qualify for a transplant. My understanding was that bc the autoimmune does not go away with a new liver, it makes ones with PBC bad candidates for transplantation as the immune system would only destroy that liver too. It is quite exhilarating to hear that u did qualify and gives me more hope than previously thought. I thank you for that…
I was truly blessed to have been given my second life for almost 20 years now. You are right - about 25% of those who receive a transplant, the PBC returns. Just like you said, the PBC is still an inherit part of our immune system. The new liver has no guarantee that your body will not attack it. I am so thankful that any time I've been given is more than I would have had without the transplant. I know of friends along my journey who weren't as lucky to have a successful transplant or didn't receive one in time. None of us know what the future will being. I just wish you come to have some peace with all you have going on. Chat anytime......
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