Acknowledgment: This patient story is sponsored by Ipsen Biopharmaceuticals, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and valuable information to patient communities. If you would like to learn more about a treatment option for PFIC, consider visiting this website for more information.

This is the unique experience of Victor and not representative of all people living with PFIC. The information provided is not intended to be a substitute for professional medical advice, diagnosis, or treatment. For questions about your health or the health of a loved one, please talk to your doctor.

Personally, Victor is a dad, husband, brother, son and friend to many, and professionally, he cares deeply about his community and helping others through his career in public service.

The road to today – 36-year-old Victor – has been shaped by many factors, including when Victor learned as a teenager that he was living with a progressive liver disease called progressive familial intrahepatic cholestasis (PFIC).

PFIC is one of several rare cholestatic liver diseases. In cholestatic liver disease, the flow of bile from the liver is slowed or blocked. Bile is a yellow fluid created in the liver to help break down food to release the nutrients inside. There are several types of PFIC, and symptoms can vary based on type. Signs and symptoms of PFIC include yellowing of the skin, poor weight gain and growth, gallstones, diarrhea and severe itching, known as cholestatic pruritus. PFIC is often diagnosed in infancy but can be diagnosed at any time.

Living with persistent itch

“It is hard to describe, but the itching I experienced was so intense. No matter how hard or often I scratched – I couldn’t find any relief despite having used hairbrushes and other miscellaneous items that made me tear my skin off,” shared Victor.

For Victor, severe itching is what triggered him to seek help and ultimately receive a PFIC diagnosis. When telling his pediatrician about the itching, the pediatrician also noticed his liver enzymes were outside of normal ranges and his liver function was abnormal. Victor was admitted to the hospital and following a liver biopsy and other testing, he was diagnosed with PFIC.

With a diagnosis, he became aware of how PFIC had impacted him and as a highschooler, he had yellowing in his eyes and skin, known as jaundice.

“As a teenager, the symptoms impacted me physically, socially, and academically and I isolated myself.”

While the complex nature of itching is not completely understood, one aspect that may cause itch is the buildup of bile acids in the liver and the bloodstream.

“Sometimes I would scratch hard enough to tear my skin, but it’s nothing compared to being kept up at night scratching something for hours without any relief. For 18 years following my diagnosis, I had to adjust, which became much more demanding as I grew up. I tried many things to find relief over the years, but nothing worked. I was restless.”

Treating the itch from PFIC

Three years ago, Victor’s hepatologist, a doctor who specializes in liver health, prescribed Bylvay® (odevixibat) for the treatment of itch. Bylvay is a prescription medicine that is approved to treat itch in people 3 months or older living with progressive familial intrahepatic cholestasis, known as PFIC. Bylvay might not work for some PFIC type 2 patients who have ABCB11 gene changes. Talk with your healthcare provider if you have questions. Common side effects of Bylvay in patients with PFIC are diarrhea, liver test abnormalities, vomiting, abdominal pain, and fat-soluble vitamin deficiency.

“I had tried many treatments, none of which were effective for me, so I was cautiously optimistic and ready to learn more.”

For Victor, finding a treatment that could help reduce the severe itching was important.

“With Bylvay, I experience less itching throughout the day and night. I feel I can focus more on other aspects of my life, like spending more time with my daughter. I have found that Bylvay is the right medicine for me.”

Although treatment options were not approved for PFIC when Victor was diagnosed, he is thankful for the progress being made for the PFIC community and that he has found a treatment that continues to be the right choice for him. Today, Victor finds himself able to dedicate more of his time on his career, fitness and family – especially his young daughter.

Read the Indication and Important Safety Information here. Access full Prescribing Information and learn more about Bylvay at Bylvay.com.

INDICATIONS AND USAGE

Uses

BYLVAY is a prescription medicine used:

• For the treatment of itching in patients 3 months of age and older with Progressive Familial Intrahepatic Cholestasis (PFIC).
• Limitation of use: BYLVAY might not work for some PFIC type 2 patients who have specific ABCB11 gene changes. Talk with your healthcare provider if you have questions.

IMPORTANT SAFETY INFORMATION

• You should not use BYLVAY if you have had or have an advanced stage of liver disease. Talk with your healthcare provider if you have any liver conditions.
• Abnormal liver tests have been observed with use of BYLVAY. Liver tests should be obtained before starting and periodically during therapy to monitor for liver injury. Immediately report to your healthcare provider any signs or symptoms of liver injury, such as, nausea, vomiting, skin or the whites of eyes turn yellow, dark or brown urine, pain on the right side of the abdomen, or loss of appetite.
• Notify your healthcare provider if you experience new onset or worsening of diarrhea.
• BYLVAY may decrease the absorption of certain vitamins, which include vitamins A, D, E, and K (FSV or fat soluble vitamins). Your blood levels of these vitamins should be measured before starting and periodically during treatment to assess for FSV deficiency. You may bleed more easily or may bleed longer. Call your healthcare provider if you have any signs or symptoms of bleeding.
• The most common side effects of BYLVAY in patients with PFIC are diarrhea, liver test abnormalities, vomiting, abdominal pain, and FSV deficiency.
• Do not swallow the 200 mcg or 600 mcg capsule(s) containing Oral Pellets whole. These are intended to be opened and the contents mixed into soft food.
• For patients taking bile acid binding resins, take BYLVAY at least 4 hours before or 4 hours after taking a bile acid binding resin.
• There is a pregnancy safety study that collects outcome data in women taking BYLVAY during pregnancy. Pregnant women exposed to BYLVAY should report if they have used BYLVAY during pregnancy by calling 1-855-463-5127.

You are encouraged to report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch. You may also report side effects to Ipsen Biopharmaceuticals, Inc. at 1-855-463-5127.

Please see full Prescribing Information.

Bylvay is a registered trademark of Albireo Pharma, Inc., an Ipsen company.

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