I am very fortunate because PBC is not a new disease for me. My mom was diagnosed in her early 40s long before urso was serendipitously discovered. I have a background in medical research and when I note something it’s based on current research (not a summary someone else has written). I read the original research and can interpret the findings. I try really hard not to give advice unless it is from my own experience and will refer people back to their hepatologist.
The only reason I joined myPBC was because I have outlived my prognosis and thought the number of years I have lived with this disease might give someone else hope. In addition, I was the caregiver for my mom who eventually got a liver transplant because of my advocacy and she lived another 22 years.
I am very lucky because I consider myself an amazingly well person who has PBC.

With gratitude
Vickie

Vicki, amazing how long you have dealt with PBC. It is so encouraging to read yout posts! I especially enjoyed the link to the article on coffee :)

Your hep might say "ok" .... your urologist might say "coffee high acid
content make it something not to
binge...watch what u add to it...
Your challenge is what we pbc folks have learned over time: Your goal is
not to cure pbc..
...it is to minimize pbc impact on your QOL and the length of your life...

...remember Drs. r learning about pbc just like u r. When i talk to my
care team folks i always take the role of being my own concierge -- and i
remind them.

With a newly presented disease like this when there is not lots of data
driven info, drs. are learning from their patients
about treatment strategies.

2 things u should do right now is

1. find out if your pbc is "compensated"....

2. Ask for a rx for xifaxan. This drug will keep toxins in the liver from
going to the brain. (THIS IS A VERY COSTLY PILL...)

If they balk at either 1 or 2, ask "why?"
If they dont like that, find another hep.

Remember, You are in charge of pbc. Always stay up with new research going
on... Dont just "browse" randomly. Find a couple of good resource sites
and stay with them as u travel down the pbc road. My 2 are Cleveland
Clinic and Mayo.

(Ooops, i almost forgot. No more alcohol or tobacco. Forever!)

Peter
LiveLongerHealthier

MyPBC team
I’ve done a literature review for the last 5 years and coffee is proven to be very beneficial for the liver. I could go into specifics but I will leave it at a general comment. I’m betting it has helped me enormously over the 36 yrs since my diagnosis.
If anyone is interested you can dm me.