Symptoms of PBC

[OrangeTulip]

This might be a strange question…but apart from feeling liver pain, fatigue and right hand neck pain what are the other symptoms for this condition I should anticipate? Does anyone have stomach pain? I just got diagnosed and I’m still trying to figure this contain out.

[Stamatiki]

Me too I am new to this diagnosis, symptoms that stood out: hot flashes only after eating, joint pain (only when I ate salty foods), fatigue, frequent use of the bathroom only after eating, confusion, fatigue, terrible dry mouth but only after salty foods (my mouth would become like the Sahara!) Occasional muscular fatigue and occasional tendon issues in my ankle. Oh and a little stitch by the liver area whenever I ate something fatty (butter or creamy) I am sure there are more and I haven't made the connection yet. Oh and my sleep has become interrupted.....

[iagra]

Some of these symptoms are not necessarily PBC related. I noticed a lot of people, once diagnosed with PBC, tend to assign blame to PBC on many issues they have, which could be unrelated. What is consistently reported are itching and fatigue. Itching, could be a reaction to urso, or other liver meds, or to the disease itself. Also, unless you have enlarged liver due to significant fibroses, and it presses on other organs, you won't have liver pain. Liver has no nerves and can't be painful. If you have symptoms, the best is to consult with your doctor. Sometimes, the symptoms go away on their own. But, if persist, I'd go and see a doctor to sort it out.

All the best to you.

[OrangeTulip in reply to iagra]

Thank you.

[Stamatiki in reply to iagra]

Thank you so much for sharing!

[CeeCee101]

I cannot recommend the book by Professor David Jones “The Definitive Guide to PBC” enough. He has been treating PBC patients for 30 years. You can get the book on Amazon, I have the ebook Kindle version.

[OrangeTulip in reply to CeeCee101]

Thank you for the book recommendation.

[iagra in reply to CeeCee101]

Thanks very much for recommending the book!

[Kearny]

Hi! There are many side-effects and symptoms but not all suffered by all. They don’t relate by stage. It truly is best to bring all symptoms to your gastro and/or hep. Good luck!

[OrangeTulip in reply to Kearny]

thanks

[CCordier]

One of the most common symptom of untreated PBC is oily diarrhea, which I had. As my Stanford University hepatologist told me when I was diagnosed several years ago, most people with PBC have the disorder for years before their diagnosis, blaming symptoms on something else. Like itching, some will just assume they have dry skin. Or, having the runs all the time. I have irritable bowel syndrome and blamed it on that, until it was so bad I took three anti diarrhea pills one day and it had no effect whatsoever.

Why diarrhea? Because PBC prevents bile from entering your digestive system so keeps you arent able to digest fats in your diet. So, if you dont have any bile in your digestive tract then fats wont be broken down into molecules that your intestines can absorb and metabolize. So, the fat just passed through your digestive tract and out! I lost 20 lbs in the 2 years or so before I was diagnosed, without any extra exercise or diet. Diarrhea is airly common when your PBC has progressed to a certain stage.

I also had pain over my liver from having a quite enlarged liver since I also had fatty liver disease when I was diagnosed with PBC. And by the way, itching is a common symptom of other liver illnesses since the liver isnt able to filter your blood as it should and toxins can build up in your blood.

Hope this helps.

Carol.

[OrangeTulip in reply to CCordier]

Thank you Carol. Did the weight loss help the fatty liver? I also have NAFLD.

[meginaromas in reply to CCordier]

Are you seeing Dr. Kwo @ Stanford? I've been seeing him since 2019. They're a good team but he tends to keep things close to the chest.

[Jlruggie]

I only have right side neck pain and fatigue. Daily yoga, chiropractory, walking and running, weight lifting, breathing and ice bath works for me so far but I wish I could find a better pcp expert and dietitian

[OrangeTulip in reply to Jlruggie]

Can I ask when you were diagnosed?

[Jlruggie]

I was diagnosed by Dr black and Dr Weinberg via high enzymes and presence of anti mitochondrial antibody in west Chester Pa and Hanamun Hospital, phila