Hello Linda. I am at Stage 4. My blood tests are good. Liver enzymes is 160. MELD score is 6. I am on Urso. I also take Empirical Labs Beet Flow for bile flow. TC Hale on U tube explains how it works. The liver no longer produces glucose which builds muscle. I eat 60 to 80 grams of low fat protein and do weight bearing exercises. Total lifestyle change when it comes to nutrition. No alcohol, soft drinks, Advil or other over the counter pain meds. Low fat, sugar and salt. Very organic and natural with few ingredients. Because I am so strict with what I eat, I do not have the itch, bloating , and nausea. I am active in the morning but start to feel tired in the afternoon so I will take a Power Nap and rest. I struggle with dry mouth and eyes.
I have gone from 220 to 160 in 5 years. I get a blood test every 6 months and an ultra sound once a year. I live every day with gratitude for making it to 71.
I have been at stage 4 for 4 years and remain steady thru hard work. Nutrition, exercise, and rest. I have maintained a MELD score of 5 to 6. This score determines whether I should be on the transplant list which is a score of 15 to 19. I don’t know when I will hit that score. . My answer will be no to a Liver Transplant.
Best wishes.
Deb

Christy- Thank you so much for taking the time sharing. I was diagnosed Jan 2023 ALP was 401 was put on URSO almost a year later. My ALP is now 185 but not going down from there. Dr wants to add Livdelzi. Looking back at routine tests by my ob/gyn I could have had it in 1982. Kaiser Dr's wrote it off as gallstones! I'm 75 retired had a physical at 72/73 and they investigated the elevated enzymes and... here I am! Thanks again for your reply.

I was diagnosed in June 2024 at stage 4. I started on Urso immediately and my ALP went from 449 to 146 within 3 months, and has stayed just slightly above normal since then. I have no other symptoms and would never have known I had PBC if I hadn't had blood work done for a medicaton switch for my MS that I've had for 19 years. I get bloodwork, a liver ultrasound, and see my hepatologist every 6 months to keep an eye on things. I do get tired, but I'm 54 and I've had MS for 19 years. I don't know how long I've had PBC, but likely quite a while so who knows how much fatigue is PBC related.