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Welcome to our community! We’d love to learn a little about what has brought you here.
I’m 73 and just diagnosed with PBC Nov 2025. My ALK levels have been on the high side for years but last August they hit 222 so my PCP insisted I see a hepatologist (3 month wait for appt). I had worked 12 hours a day sitting in front of a computer till 2024, was 60 lbs overweight, a social drinker, have celiac (autoimmune) since birth but gluten free since 2007. My PCP thought that these factors all together were the cause of high ALKs until they got too high I guess. Liver doc did specific bloodwork and said an antimitochondrial antibody test confirmed PBC. I had never heard of this, had no symptoms and the liver doc was unalarmed when he told me. But he ordered a Fibroscan that was misleading as it can’t see thru my fatty liver so he then ordered an MRE that confirmed stage 2 fibrosis - PBC. He told me to lose weight, particularly visceral fat, no alcohol, exercise, and put me on 1200mg ursodiol daily. I did a lot of AI research and put myself on a gluten free Mediterranean diet. As if I wasn’t annoying enuf to go out to dinner with by asking waitstaff tons of gluten free questions, now also requesting low sodium, low sugar, low carb etc. I cook a lot more and so far have lost 35lbs but I’m older and a good exercise regimen is challenging. I keep trying. ALK levels down to 157 but more to go so fingers crossed. I see the liver doc every 6 months. Still asymptomatic and praying it stays that way. Urso is def working but expensive as Medicare puts it in a high tier. If I ever need more advanced meds they are not covered at all. So I must make this work! Ugh and SMH!
That’s a lot to take in, especially getting diagnosed when you weren’t even feeling any symptoms. But it really sounds like you’ve stepped up and are doing what you can on your end, and that’s not easy with all the changes you’ve had to make. But I really hope your numbers keep trending down, especially with how much effort you’ve been putting in. It’s tough that the medication that’s working comes with financial stress, but you’re clearly doing everything you can to stay ahead of it. Just keep going and take things one step at a time! Thanks for sharing you experience with us! All the best, Latoya (Team Member)
I went to my primary back in 2003 for a routine check up. I was 38 and hadn't had one in years. My bloodwork showed liver enzymes through the roof and cholesterol was over 400. A repeat of labs and a phone call telling me I have PBC. Sent me to gastro who confirmed through biopsy. Symptoms were horrible. Itching, nausea, fatigue, joint pain. Fast forward 16 years and in stage 4 with cirrhosis. Transplant was july of 2019 at 54. In 2021 through biopsy diagnosed with recurrence of PBC. So far everything is status quo. No real Itching yet. Just occasional nausea and fatigue. I am now 61 and will be 7 years post in July.
My goodness. You sure have been through a lot and have had to adapt at every stage along the way. That takes a great amount of resilience. But it’s good to hear things are stable right now, even if you’re still dealing with some symptoms here and there. Are you able to manage the fatigue pretty well day to day? -Latoya (Team Member)
I started to have abnormal labs in 2001. Over 25 years ago. The only thing the doctor said was don't take Tylenol and don't drink alcohol. I didn't do either. Soni assumed I was ok and the issue was never brought up again. In 2015, 14 years later I had gastric bypass surgery. The surgeon said you have a fatty liver, don't worry about it it will get batter after you lose weight. I lost 130lbs. Doctors said good keep doing what you are doing and your liver will be fine. Fast forward 4 years later I moved and saw a new PCP. She said Debbie you need to see a liver specialist right away. It took me 8 months to get an appointment then COVID happened and the world shut down. In 2020, I meet my love of my life. We get married mid COVID the world opens up. I finally get in to see the hepatologist had a biopsy and biopsy read Stage two, however all other imaging said cirrhosis. Doctor said no I am confident it's just stage 2. Well she was wrong I am stage 4 compensated with Cirrhosis. And finally received a diagnosis in 2021. 9 months after marrying the love of my life. Now in 2026 my kPa score is 3 times worse and only to be told I only have 2-4 years left. And not sick enough for a transplant. So now I am out of work due to Hepatic Encephalopathy that is not improving. Feeling miserable and just sad about having to give up my independence due to HE. The fatigue is just terrible and it is difficult to just survive most days.
I learned so much more about you,
. Thank you so much for sharing such a personal story. Your story isn’t just about PBC, it’s about years of being told you were fine, things getting brushed off, and then suddenly having it all hit you at once. There’s a real grief here and it's not just about your health, it's also about the life you expected to have with your now partner. I'm so sorry you had to go through so many highs, lows, and turnarounds in your journey. You certainly didn't deserve this experience, especially after doing everything as directed to ensure a better life. But even with everything you’ve been through, you’re still showing up and telling your story, and that means a lot because there’s still so little awareness about PBC. So voices like yours really do make a difference. You deserve to have support, understanding, and moments of relief in the middle of all of this, and I truly hope you get more of that. You're not alone here, and we appreciate you being a part of this community. Warmly, Latoya (Team Member)
Hello my name is Angie. I was diagnosed with PBC 12 years ago. I was so confused thinking how is this possible I don't drink alcohol. I did have some alcohol when I was a teenager, I got so sick that I told myself never will I drink again. And I never did after that. I was on a transplant list for almost 2 years, during that time I needed oxygen 24 hours because my lungs were not working properly and my oxygen level were too low. I was no longer able to work. I was so tired all the time that I rarely went out. Well in 2015 I had my liver transplant, it was terrible. I didn't think I was going to make it. At first lab tests were every day, I took 100 pills daily. As time went on they slowly took some of the medication away. The liver transplant did not cure my PBC I still have it, there is no cure. The hardest thing for me is the chronic fatigue, I'm tired all the time. It's never ending. Some days I say ok I slept good last night I'm not going to be tired but before I know it I again have that never ending fatigue. I am currently having a kidney biopsy my function levels are elevated. This can happen because of the anti rejection medicine Tacrolimus that I've been taking for 10.5 years or since I was just diagnosed with Lupus that can cause problems with your kidneys. But I still thank God every day for being here, alive to enjoy my grandchildren, they give me strength. To continue moving forward one day at a time. I am so happy to have found this platform for support and to be able to share my experience and hopefully help someone feel a little better.
Are you taking Ursodiol? So glad to have you here with us,
! You’ve been through a lot… being that sick, needing oxygen, going through a transplant, and still struggling. It's a lot. But what really stood out to me was your mindset. The way you talk about your grandchildren and just taking things one day at a time is admirable. That kind of mindset isn’t easy to hold onto after everything you’ve been through, and it really shows how strong you are. I’m really glad you found this space too! Sharing your experience will absolutely help someone else feel less alone. Know that we're in this together! All the best, Latoya (Team Member)
