PBC for over 20years

[Icecream79]

I am Mary Williams . I have had PBC for 20+ years and I have been taking URSO the whole time. I have no side effects from the medication. I have never met anyone else in person with PBC. It’s nice to be able to communicate with others and share.

[pbclimbu]

I have never met anyone with PBC in person either. I had some initial side effects which were quite minor but been ok since last 13 years. It’s been pretty stagnant but I’m really worried about it getting worse suddenly. My ALT/AST markers were in 20s in the most recent LFT tests so I’m pleasantly surprised how well that’s been recently with no real change in my diet or exercise which are all over the place tbh. Good to connect with you here.

[OrangeTulip]

Mary thank you for sharing and giving me hope. I am 3 years into this journey and still navigating PBC. Any of your insights or advice are valuable.

[Muffymac2020]

Mary, you are not alone. What part of the country are you in?

[Roklyn]

I was diagnosed in 2003. I have been on Urso since. My LFTs are all within normal limits, as is my platelet count. It does not control me. I have a glass of wine or a cocktail once or twice a week, get 7 to 9 hours of sleep, and have a good handle on it now. My gastroenterologist told me in his practice of 300 patients he had 1 other PBC. We are a rare breed.

[Muffymac2020 in reply to Roklyn]

Yes. We are LESS THAN 1% of the total US population. Why couldn't we have just won the lottery instead?

[rderezin]

Congratulations..I started URSO in 1997 when it first.became available...never miss my meds ...

[TanGram]

I get comfort from reading these posts where I see other's diagnosed 20 years ago, and doing good. I'm almost 5 years into my diagnosis. I still worry when my numbers change after being in range, then they're not.. I worry about constant fatigue, some days off the charts fatigue, I worry about my constant stool color changes... I worry about the swollen liver feeling I get sometimes, and I worry about how dang tan I get when in the sun. So, coming here, I know I'm not alone as I navigate through this disease. I share symptoms,and ask questions to the group. I live in Arizona, and Washington State. I know of no one else with this disease. It's nice to communicate with others =)Laurie =)