Hi @michellesauer,

I also have PBC. I was diagnosed in 2008 the exact same way that you were and have been on Urso ever since. I’ve been fortunate to have a doctor that is not just extremely knowledgeable but also one who travels to regularly give talks on this autoimmune disease and has even been on the board of a few medical companies trying to help create better medications as more is learned about this (though not one single thing is pushed or forced, he always asks me questions and my own opinions about my treatment). I only say this because my gastroenterologist can do virtual visits. I’m in Virginia Beach, VA. I don’t know if it’s ok to share specifics here, but if it’s allowed and/or you want to reach out to me somehow (sorry, I’m still new at all of these forums) I would love to share.
The main issue, that I am certain of, is that our mitochondria are attacked - these are the powerhouses and main energy stores in our cells. Hence our major fatigue. Actually, in 2021 I was also diagnosed with hypermobile Ehlers-Danlos Syndrome, h(EDS). One of the most common side effects is also chronic fatigue. So for several years I’ve been trying to learn more about pacing and trying to better manage this crazy body of mine.
I’m glad we’ve found one another and hope it helps you in some small way at least to know that you’re not alone. Take Care!