PBC The Bigger Picture

PBC The Bigger Picture

When it comes to living with
PBC, there’s a bigger picture.

PBC The Bigger Picture

We aim to help every person affected by PBC live the best life possible. It all comes down to recognising the importance of three things: treatmentlifestyle and support.

Become a member of the PBC Foundation (it’s free) and make sure you’re logged in to
access all the links on this page.

Treatment

There’s no better person to manage your care than the person who knows you best – you.

It is incredibly important that you are on a personalised treatment pathway, specific to you. This means your first-line therapy (Ursodeoxycholic Acid or "Urso" for short) should be given to you according to your weight. All the most recent guidelines in best practice of PBC management recommend 13-15mg/Kg per day. Please check this is your daily dose.

If you are one of the small percentage who do not respond to Urso, you should also be on the right second-line therapy for you. There is only one licensed second-line therapy for PBC, which is Obeticholic Acid (or OCA for short).  There are some people who cannot access OCA for a number of reasons but, again, you need to make sure you are on the best treatment for you.

We are here to help, should you need to ask about or discuss your treatment options. Most importantly, you need to be informed and engaged in the conversation with your clinician.  This will help you access the best care for you and your PBC.

The PBC Foundation app helps you track your moods, symptoms, and test results over time. It also includes a dosage calculator which you can use to check you're getting the right dose of UDCA.  It also incorporates a medicines diary and reminder to make sure you take all your tablets daily.

The EASL guidelines in lay terms help with questions for your next appointment in all aspects of your care.

Lifestyle

There is more you can do to manage your PBC than just taking medication.

Healthcare begins with self-care.  If we were on a flight that went wrong, our responsibility is to make sure we put on our own oxygen mask on first. We are asking you to follow this example: by looking after you, you are in a better place to look after everyone and everything else you need to.

Healthcare begins with self-care. This means looking after you: the big stuff, the small stuff, the in-between stuff can all make an enormous difference to your daily quality of life.  All we ask is that you look after you as best as you can: one decision at a time.  

We can help you with self-management tools and techniques, incorporating emotional, psychological and physical self-care. You can call us using all sorts of technology, including Skype, whatsapp or facetime; you can participate in a webinar or come and experience one of our seminars or workshops.

Find recipe ideas in every edition of Bear Facts

Our compendium is full of lifestyle advice
ranging from sleeping to mental health

Watch Esther’s story about movement as
her medicine, and all the other videos on our
YouTube channel

Support

This isn’t a journey you need to make on your own.

Replace with we, and illness becomes wellness.

That is something to think about.  Data tells us that social isolation can have a bigger impact upon quality of life than symptoms do.  If this sounds like your experience, come and join us for a conversation.

We promise, you’re not alone. From coffee mornings to self-management workshops, the Foundation has a busy calendar of events to help you meet friends you didn’t know you had. Just sharing a cup of tea with someone who really understands what you’re going through can make all the difference. And who knows, as you’ve found the support you need, you may find you’ve given it right back.

Call our 24-hour helpline anytime, any day:
0131 556 6811

Come along to an event happening near you

Become part of our ever-growing volunteer network

Talk to other members about anything on our Health Unlocked forum