Newly diagnosed to PBC - help please

[gurps89]

Hi,

Firstly may I say how relieved I am to find a this community, foundation for PBC as a daughter of a newly diagnosed mother.

Last week my mum was diagnosed with PBC, having many years prior with liver damage, jaundice etc. She is currently waiting for her biopsy appointment however we are very keen to know what we can do at home to stop the damage getting worse. It has been stated that her liver has been damaged by 28% with a 11% increase over the last 6 months.

She has been taking ursodeoxycholic acid for many years but it seems the damage is only increasing.

I would be so grateful if you could provide me a clear insight into what diet is the best to follow, in terms of items of food to eat more of and those to eat less/cut out. I feel somewhat over whelmed with the different types of information so a narrowed advice would be very much appreciated.

In addition to this and exercises to follow bearing in mind she has severe osteoarthritis.

I look forward to hearing back from you all, Thank you again.

Kindest Regards,

Gurpreet

[HealthyChik]

Hello,

I'm sorry to here about your Mum's problems with PBC. Since you've found this site you may already be aware of

pbcfoundation.org.uk/. The site has a wealth of information that will help and you can even call and talk with their knowledgeable staff. My advice would to be sure to ask her doctor about the exercise and diet when she's able to see them. In the meantime time most sources just recommend a sensible diet high in fruits and vegetables and lower in fat, sugar, and salt, however, the diet can be a bit more restricted if she has developed cirrhosis, so best to ask the doctor. I have the same advice for exercise...be gentle and sensible until you talk with the doctor. I have included a few links that may be helpful and once she sees her doctor, you might consider asking if she would benefit from a consultation with a nutritionist and a physical therapist to help get her off to a good start with diet and exercise. Also, if she is considered a non-responder to Urso, consider asking the doctor about the next line of treatment, Ocaliva. There is lots of info on that in this forum. Hope this was helpful and best of luck🙂

mayoclinic.org/diseases-con...

liverfoundation.org/primary...

[butterflyEi]

Hi welcome to the group, very sorry to read your post though. HealthyChik has given great advice and with the diagnosis of damage to liver everything you try does need to be run by the specialist before making radical changes. It is known that as we advance in liver damage the body finds it difficult to retain vitamins A D E & K so you may want to ask the specialist about adding in vitamin supplements. Also with the diagnosis of severe osteoarthritis is your mother being prescribed calcium in any form? If not look for calcium rich foods which are mostly in dairy products but look for low fat options, if she is dairy intolerant other foods which can be found listed on the following link are helpful

nhs.uk/live-well/healthy-bo...

also you may like to look at the following link, scroll almost to the end of the page

britishlivertrust.org.uk/li...

let us know how you and your Mum get on

[PBCRobert Partner]

Hi Gurpreet.

As the son of someone diagnosed with PBC for 25 years, I can understand where you are.

I work for the PBC Foundation and I an sure we can help you on your journey as well as your mum on hers. Feel free to contact us directly.

For those not in the UK, we use Skype, whatsapp and facetime to keep costs down.

Yours,

Robert.

[kimphoebe]

Hi there

Is your mother seeing a heptoligist who specialises in pbc. If she been on uso for years and she getting worst she may be a nonresponder to the uso. There are new drugs out there now that they are trialing. Being a nonresponder to uso myself I am on a trial at the mo

and blood results are all in normal range.

[Hidden]

Hello, Welcome here! Your mum has the great advantage of having you to take time to understand the issues of PBC. That will be the absolute best help anyone could have, a beloved child who chooses to be aware of the difficulties. Please tell us how you are both getting on when you can.

Best wishes