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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi everyone, I was diagnosed 4 years ago. Is it normal to feel tired all the time and am I supposed to start medication yet or no?

A myPBCteam Member asked a question 💭
Seymour Australia

I've been told very little by anyone I don't know what is supposed to happen

April 5, 2025
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Reactions
A myPBCteam Member

Hi Cassandra. I have had pbc for most of my late teen/adult life, I am 38. I recommend seeking a hepatologist if you don’t already see one. Blood tests are important but a liver biopsy will get you the most answers. This is assuming you have not had one yet.

April 5, 2025
myPBCteam

Yes, fatigue is one of the most common symptoms of PBC. In fact, extreme fatigue can be quite disruptive to daily life, making it difficult to complete regular activities. Many myPBCteam members report experiencing bone-crushing fatigue that requires them to make adjustments to their daily routines. Regarding medication and Show Full Answer

Yes, fatigue is one of the most common symptoms of PBC. In fact, extreme fatigue can be quite disruptive to daily life, making it difficult to complete regular activities. Many myPBCteam members report experiencing bone-crushing fatigue that requires them to make adjustments to their daily routines. Regarding medication and treatment, you should definitely be working closely with a hepatologist (liver specialist) to manage your PBC. It's concerning that you haven't received much guidance. Consider being your own advocate by scheduling an appointment with a specialist and preparing a list of questions, including:
- What stage is your PBC?
- What treatment options are available?
- What symptoms should you expect?
- What can you do at home to manage symptoms?

Don't hesitate to seek a second opinion if you're not getting the care you need. Many people with PBC find that having a knowledgeable, responsive healthcare team makes a significant difference in managing their condition effectively.

April 5, 2025
A myPBCteam Member

PBC progresses . You must demand to know what stage you are in. Ask to see a Liver Specialist. Ask to know your MELD score.

May 1, 2025
A myPBCteam Member

Hi Cassandra, with PBC it’s best to begin medication now to prevent it from worsening as it’s a progressive disease. I went undiagnosed until 2020, been on meds ever since, had two liver biopsies, MRI of liver, and labs done about every three months but have had every two weeks depending on how I’m doing. I’m now stage 2 fibrosis. I wish you well with your PBC journey.

April 23, 2025
A myPBCteam Member

Thank you for your reply. I haven't had anything other than an ultrasound and blood tests. Then I was told this won't affect me till I am older in life. That's it

April 5, 2025

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