Anna is a loving mother of three, an avid yogi and ambitious professional. She spent years building a career in the corporate and higher education sectors until unexplained fatigue, relentless itching and brain fog caused her life to take a confusing and painful turn.
What she didn’t know then was that these were early signs of primary biliary cholangitis (PBC), a rare, chronic liver disease that can cause uncomfortable and even life-altering symptoms, and if left untreated, can lead to serious complications—including liver failure and the need for transplant.i,ii Yet for many, including Anna, getting a diagnosis was a winding road full of uncertainty. That’s because the symptoms of PBC—though real and debilitating—are often invisible to others.
“I was miserable,” Anna recalls. “The emotional and mental impact of my symptoms also took a toll. All I wanted was answers.”
She knew something wasn’t right. “The fatigue, brain fog, and relentless itching didn’t match the way I lived my life,” says Anna. “I’ve always been driven—constantly multitasking, staying productive, and putting my own health after work and family. But these symptoms disrupted everything.”
After nearly three years of searching for answers, a routine blood test revealed elevated liver enzyme levels—specifically, alkaline phosphatase (ALP). From there, one consultation led to another: from her primary care doctor to a gastroenterologist, back to her rheumatologist, and eventually to a liver specialist until finally, a liver biopsy confirmed what Anna had sensed all along: something was seriously wrong. She had PBC.
Looking back, Anna says she owes a lot to finding the right doctor—one who truly listened. “He told me he wasn’t going to give up on me,” Anna says, “even when I felt like I was at the end of my rope.”
Overcoming Barriers & Finding Care
Like many people living with chronic illness, Anna encountered barriers and delays in getting the right diagnosis and care.
“For women especially, stigma can add yet another layer of difficulty to getting the right care,” says Anna.
As someone who spent years balancing a demanding job, caring for elderly parents, and showing up for her family, Anna was used to being productive and resilient. “I think people assumed I was just tired or overwhelmed,” she reflects. “But I know my body—and I knew something deeper was going on.”
Getting a proper diagnosis was a major turning point. It allowed Anna to begin treatment, but the road was not straightforward. After six months of little response to her initial treatment, Anna and her doctor switched her to a new medication called Iqirvo® (elafibranor), a prescription medicine used to treat PBC in combination with ursodeoxycholic acid or UDCA in adults who have not responded well to UDCA or used alone in patient unable to tolerate UDCA.
Together, they discussed the risks and benefits of treatment, including that Iqirvo should not be taken when pregnant and can cause muscle problems and pain, bone fractures, liver problems, allergic reactions, blockage of the bile duct, and may increase risk of gallstones.
Within a couple of months, Anna says she started seeing a “noticeable difference.” Her ALP levels decreased, and symptoms—especially the debilitating itch—began to improve.
“It felt like hope,” she says.
Navigating Life with PBC
Today, Anna continues to work with her care team to get the care she needs. She says a big part of that is having open communication—especially since she also lives with another autoimmune condition, which isn’t uncommon. People with PBC, particularly women, have a higher likelihood—up to 55%—of having, or developing another autoimmune condition such as Sjogren’s syndrome.iii
“It’s so important that your health care providers are talking to one another to help you connect the dots,” she says. “I encourage others to gently—but firmly—push for answers and find the care you need.”
Anna balances treatment with a lifestyle that supports her physical and emotional well-being: nutritious food, movement, quality time with loved ones—and small joys, like her homemade tiramisu.
Inspiring Others
While life with a rare liver disease is not without challenges, Anna is determined to raise awareness and help others feel empowered to advocate for themselves.
Her journey continues in bold and inspiring ways. She’s currently pursuing a PhD in Guatemala, plans to go back to work and possibly pursue a teaching career, and she dreams of one day offering bilingual yoga classes in Texas—merging her passions for wellness and education to serve others.
Her advice to others is heartfelt and clear:
“Be open. Listen to your body,” she encourages. “You are your own advocate—and you deserve to feel empowered to own your condition and find the care you need.”
It’s important to remember that everyone is different and experiences with treatments will vary from person to person. People should always talk to a healthcare provider about the treatment that will be best for them or their family member. Anna was compensated by Ipsen for her time sharing her story.
Indication and Important Safety Information
What is IQIRVO® used for?
IQIRVO is a prescription medicine used to treat primary biliary cholangitis (PBC) in combination with ursodeoxycholic acid (UDCA) in adults who have not responded well to UDCA, or used alone in patients unable to tolerate UDCA.
IQIRVO is not recommended for use in people who have symptoms or signs of advanced liver disease. It is not known if taking IQIRVO will improve your chance of survival or prevent liver decompensation.
It is not known if IQIRVO is safe and effective in children under 18 years of age.
What Warnings should I know about IQIRVO?
- IQIRVO can cause muscle problems (myalgia, myopathy, rhabdomyolysis) and muscle pain that can be severe. Treatment with IQIRVO may cause muscle pain or worsen existing pain and can increase the level of an enzyme in your blood called creatine phosphokinase (CPK); both can be a sign of muscle damage. If there is new or worsening muscle pain, your healthcare provider may examine you and perform a blood test. Stop taking IQIRVO and call your healthcare provider right away if you have any of the following signs or symptoms: severe muscle pain, unexplained soreness, unexplained muscle weakness, or dark, reddish urine.
- IQIRVO may increase the risk of bone fractures. Tell your healthcare provider about any bone fractures, or if you develop pain, or have changes in your ability to move around.
- IQIRVO may cause harm to an unborn baby when taken during pregnancy. Women taking IQIRVO who can become pregnant should use effective birth control during treatment and for 3 weeks after the last dose of IQIRVO. Talk to your healthcare provider about birth control methods that may be right for you. Tell your healthcare provider right away if you become pregnant or think you may be pregnant.
- IQIRVO can cause liver problems and abnormal liver blood test results. Your healthcare provider should do tests before starting and during treatment with IQIRVO to check your liver function. Tell your healthcare provider right away if you experience any of the following during treatment with IQIRVO: swelling of your stomach-area (abdomen), yellowing of your skin or whites of your eyes, black, tarry, or bloody stools, mental changes such as confusion, being sleepier than usual or harder to wake up, slurred speech, mood swings, or changes in personality, or coughing up or vomiting blood, or your vomit looks like coffee grounds. If you have severe stomach-area (abdomen) pain, nausea, vomiting, diarrhea, loss of appetite or weight loss, new or worsening fatigue, weakness, fever and chills, light-headedness, or less frequent urination, tell your healthcare provider right away.
- Some people taking IQIRVO had allergic reactions, which may include rash, trouble breathing, itching, or swelling of your face, lips, tongue, or throat. If you experience any of these, stop taking IQIRVO, call your healthcare provider right away or go to the nearest hospital emergency room.
- IQIRVO can cause blockage of the bile duct and may increase your risk of gallstones. Call your healthcare provider right away if you develop pain in the upper right stomach area or yellowing of the skin.
You should not use IQIRVO if you:
- Have advanced liver disease.
- Are pregnant or plan to become pregnant. IQIRVO can harm your unborn baby. You should not become pregnant during treatment with IQIRVO.
- Are breastfeeding or plan to breastfeed. It is not known if IQIRVO passes into your breast milk. Talk with your healthcare provider about the best way to feed your baby if you take IQIRVO.
What are the side effects of IQIRVO?
The most common side effects of IQIRVO include weight gain, diarrhea, stomach pain, nausea, vomiting, joint pain, constipation, muscle pain, bone fractures, gastroesophageal reflux disease (GERD), dry mouth, weight loss, and rash. These are not all of the possible side effects of IQIRVO. Call your doctor for medical advice about side effects.
What other medications might interact with IQIRVO?
Tell your healthcare provider about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. IQIRVO can affect the way certain medicines work. Certain medicines may affect the way IQIRVO works. If you take a bile acid binding resin, take IQIRVO at least 4 hours before or after you take your bile acid resin.
Rectangle 3, TextboxYou 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.
IQIRVO is a registered trademark of Genfit, S.A. IPSEN CARES is a registered trademark of Ipsen S.A.
©2025 Ipsen Biopharmaceuticals, Inc. All rights reserved.
June 2025. IQV-US-002187
[i] Lindor KD, Bowlus CL, Boyer J, Levy C, Mayo M. Primary Biliary Cholangitis: 2018 Practice Guidance from the American Association for the Study of Liver Diseases. Hepatology. 2019 Jan;69(1):394-419. doi: 10.1002/hep.30145. Epub 2018 Nov 6. PMID: 30070375.
[ii] Hirschfield GM, Chazouillères O, Cortez-Pinto H, Macedo G, de Lédinghen V, Adekunle F, Carbone M. A consensus integrated care pathway for patients with primary biliary cholangitis: a guideline-based approach to clinical care of patients. Expert Rev Gastroenterol Hepatol. 2021 Aug;15(8):929-939. doi: 10.1080/17474124.2021.1945919. Epub 2021 Jul 7. PMID: 34233565.
[iii] Sarcognato S, Sacchi D, Grillo F, Cazzagon N, Fabris L, Cadamuro M, Cataldo I, Covelli C, Mangia A, Guido M. Autoimmune biliary diseases: primary biliary cholangitis and primary sclerosing cholangitis. Pathologica. 2021 Jun;113(3):170-184. doi: 10.32074/1591-951X-245. PMID: 34294935; PMCID: PMC8299325.
