Back to diagnosed!: Now after about more than... - PBC Foundation

PBC Foundation

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Back to diagnosed!


Now after about more than two years, at last back to officially diagnosed with PBC but no medications fore me since I get very bad rashes from Ursofalk. It is somehow comforting to know even without medications. Hoping for all to be doing well and your medications are working for you.

11 Replies

There are other alternatives if urso does not agree with you: fenofribate & ocaliva. Ask a hepatologist for an alternative treatment plan.

Thanks I have tried fenofribate also didn’t work for me and as for o’clock hasn’t been approved here in the down under!

Have you trialled Bezafibrate? Might be worth a mention to your Hepatologist.

Thanks but I believe it would be similar to fenofibrate!

Hopefully it will be approve soon so u can be treated.

Thanks to both of you but due to other autoimmune conditions it is not easily done. They will keep an eye and if the condition got worth, I believe they would try something.

Stay well!

Thanks you too stay well and safe

Hello from Sydney,

Hope you are doing as well as you can

keep positive 👍🙂

Evaibrahim60 in reply to Sydgal

Thanks I’m ok I think considering the made world we live in today. I hope you also are doing well. Eva from Melbourne

Evaibrahim60 in reply to Sydgal

Hi again I have just read your earlier comments! As for life expectancy I don’t know may be everyone is different. First diagnosis for me almost at the same age as yours. Still here more than 20 years after. I was diagnosed in the early 2000’s and I was on Ursofalk for about 17 year, last two of them I suffered horrible rashes then I made my own discovery and found it was the Ursofalk. I have stopped now left my first GI and looked for another. Maybe you know that they have to run their own testing finished my second journey not knowing what it’s only somthing isn’t quite right about the liver. I gave up searching and got busy with other medical conditions also discovering that I have RA and because of the treatment went to another GI who has found again that I have PBC. Sorry it has got too long but the point is we should live as normal as possible like everyone else and we will overcome whatever we meet in our journey here.

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