My Evolving Treatment Path With PBC

I was diagnosed with primary biliary cholangitis (PBC) in 2004 at age 51. I had an initial alkaline phosphatase (ALP) in the high two-hundreds. My gastroenterologist immediately put me on Ursodiol, which proved slightly effective in lowering my ALP.

After several weeks on Ursodiol, my ALP had come down to the low two-hundreds. This was encouraging, but it was still way beyond the normal range. My prognosis of possibly needing a liver transplant by age 70 was a great incentive to follow the doctor's recommendations and take my medication religiously.

Fears that my PBC was worsening

Ten years ago, I required extensive abdominal surgery due to complications from diverticulosis. The surgeon removed a section of my colon and a benign fistula the size of a grapefruit. I wore an ileostomy bag while my intestines healed. Six months later my ileostomy was reversed. I was ecstatic not to have to wear the bag, but my incision was producing massive amounts of ascites fluid.

My surgeon explained this is sometimes expected, but I was producing a much larger volume than would be considered normal. My gastroenterologist was very concerned that this may be a symptom of my PBC worsening.

Considering a new treatment

He asked me to schedule an appointment with a liver transplant specialist at MedStar Georgetown University Hospital. This doctor had me repeat blood work and scheduled me for a FibroScan, a less invasive alternative to liver biopsy. This was to measure liver stiffness and scarring.

The bloodwork confirmed high ALP, and the scan revealed significant liver scarring. He was not sure if the ascites fluid from my surgery was due to my PBC, but was concerned that my ALP remained high.

He informed me of a new drug, Ocaliva, found to significantly lower ALP. However, the cost (approximately $9,500 per month) was concerning. So were some of the possible side effects: onset of severe itching, reduced levels of good HDL cholesterol, and worsening liver problems.

After discussing Ocaliva with my gastroenterologist we decided to just continue the Ursodiol. This proved to be a very good decision. That's because the U.S. Food and Drug Administration pulled Ocaliva from the market, in part due to its risk of side effects and complications.

Changing the dosage of my medication over time

I have continued taking Ursodiol for 22 years, as of my writing this. My first dosage was 500 mg in the morning, 250 mg at lunch, and 500 mg at bedtime. The dosage is based on weight, and I weighed 187 pounds. I also have had Type 2 Diabetes for over 25 years.

Nine years ago, my general practitioner was very concerned that I had an abnormally high A1C (8.7). And my fasting blood sugar was in the 130-140 range. My general practitioner put me on Ozempic. Miraculously my weight dropped to 157 pounds in six months with blood sugar coming down to normal ranges. And my A1C reduced to 6.8! Accordingly, my gastroenterologist lowered my dose of Ursodiol to 500 mg in the morning and 500 mg in the evening.

After retiring in 2019, the cost of Ursodiol became problematic for me. Thirty-day supplies ran up to $400. That was a lot on fixed retirement income. Fortunately, I discovered The Assistance Fund (TAF), which provides independent financial support to help patients afford out-of-pocket expenses for specialized medical treatments.

I qualified for the program. It requires patients to be a permanent resident or citizen of the U.S. and at an income level between 3-4 times the federal poverty level. The program has reimbursed me for all my Ursodiol expenses since retirement.

Deciding to start a new PBC treatment recently

Unfortunately, my ALP has remained consistently high over the years even with Ursodiol. While not getting worse it was also not getting any better. I had seen clinical trials and literature concerning a newer drug called Livdelzi. I thought it appeared promising in lowering ALP without the severe side effects of Ocaliva.

My gastroenterologist agreed it was worth a try. It is also quite expensive, at $12,500 per month. Fortunately, Gilead, the pharmaceutical company who manufactures it, has a patient assistance program (PATH) to help navigate the most cost-effective ways to obtain the drug. Since I was on Medicare, they suggested I apply for the Medicare Prescription Payment Plan. It allows you to spread the out-of-pocket maximum cap of $2,100 over 12 months.

My results so far on the new treatment

I started Livdelzi in January 2026. At that time my ALP was 224. After five months, my ALP was down to 104, well within normal range!

Studies indicate that when ALP levels decrease and normalize, complication-free survival rates can improve with PBC.¹

I continue taking the Livdelzi along with the Ursodiol. My doctor and I are very encouraged by these results. But we continue with periodic blood work, abdominal ultrasounds, and FibroScans, hoping for even better treatments in the future.