My Alk phos score is 130. My meld score is 6 I feel good. No itch. I moved to stage 4 , 6 months ago and was diagnosed 20 years ago. Our bile can’t break down fats except for olive oil. Avocado oil and MCT oil. I stay away from bad fats like margarine , crisco, fatty meats, etc. I drink a small bottle of kefir twice a day. Low sugar, low fat. We tend to lose bacteria in our gut. Keep my salt intake at around 1500 mg. I eat 60 to 80 grams of protein daily. Fresh fruits and vegetables, unsalted nuts for a snack. Eat small meals. I work out 3 times a week, plus do chores.
I am on 350 Urso twice a day. My symptoms are dry eyes and mouth, mild bloating
My weight is good. I hope I have another 20 to 25 years. Life is good.

Hi Joyce
You and I are in the same stage. I am only taking Urso at this time. I get checked every 6 months. It is my understanding when and if our Alk Phos goes above 200 then the second medication is given. So far Urso is still working for me and my numbers are down. I eat totally clean and organic. No alcohol. I drink kefir daily for my digestive tract. So far I have made it to 70. Best wishes on your journey.

Hi Deborah, thanks for your response. My Alk Phos never got above 200 being on Urso, but was down from 340 when I first got diagnosed, and then went on Urso and Ocaliva and my Alk Phos is 120's consistently now. I too go see my Hep.Dr. every 6 mos after a blood draw. I do NOT drink any alcohol and watch my diet, especially salt and sugar. How long have you been diagnosed with PBC? And with stage 4/Cirrhosis? Any symptoms?

I've been on Urso for 23 years. Had all the classic symptoms of PBC. Itching, like I was going out of my mind, high levels in my labs and skin darkening. I just did a fibroscan and I am waiting for my doctor at UCLA to get back to me with the results. I didn't know that there were stages of this disease. I learned that from this site. Having trouble getting an appointment or video call so that she can explain it to me. Very frustrating.