Patient Stories | TAVNEOS® (avacopan)

Approved Use: TAVNEOS® is a prescription medicine that is used with other medicines (such as glucocorticoids) to treat adults with severe

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Approved Use: TAVNEOS® is a prescription medicine that is used with other medicines (such as glucocorticoids) to treat adults with severe active anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (granulomatosis with polyangiitis [GPA], formerly known as Wegener’s granulomatosis, and microscopic polyangiitis [MPA]). It is not known if TAVNEOS is safe and effective in children under the age of 18.

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Hear from real people who added TAVNEOS® to their severe active GPA or MPA treatment

You and your doctor can decide if adding TAVNEOS® is right for you

Glen
Severe active GPA

Watch Glen’s Story
“

I’ve learned that if you keep a positive attitude, it’s a whole lot easier to talk to people about what you’re going through, and it’s a whole lot easier to lift people that are going through similar problems.”

Watch Glen’s Story

After a variety of symptoms, like nosebleeds and ear pain, started interrupting his active social life, Glen knew something was wrong. But it wasn’t until he went into respiratory failure and spent time on a ventilator that he was diagnosed with GPA in the hospital. Now, Glen has learned the importance of keeping a positive attitude. Sure, he gets down sometimes, but as he says, “I choose not to consider myself beat up. I prefer to be upbeat.” Over the years, he tried many different medications, but it was during a relapse of severe active GPA that his doctor suggested adding TAVNEOS® to his treatment regimen. TAVNEOS® helped Glen reach remission, and he’s even been able to reduce his steroid use.

  • Diagnosed in: 2011

  • Hobbies: Cooking, playing mandolin, photography, camping with his family and dogs

  • Fun Fact: Glen and his wife like to attend Bigfoot conventions together

Jim
Severe active MPA

“

Simply talking to others who are going through the same thing can be so helpful.”

The start of Jim’s retirement didn’t go quite how he expected. An athletic man, he suddenly couldn’t keep up on bike rides, and he would experience nosebleeds throughout the day. But it wasn’t until he started rapidly losing weight that his wife pushed him to see his doctor. A couple days later, he received a call telling him to head to the emergency room right away—his kidneys were severely affected. While in the hospital for several days, he learned he had MPA. He wanted to know more, but researching only scared him further. Luckily, he wasn’t alone in this journey. His rheumatologist had a plan. They discussed including TAVNEOS® for the treatment of severe active MPA. With TAVNEOS®, Jim was able to reach remission and is happy to have found a treatment option that works for him.

  • Diagnosed in: 2023

  • Hobbies: Kayaking, spending time with his wife and grandkids, traveling

  • Fun Fact: Jim and his grandkids meet up several times a month to play cards

Jessica
Severe active GPA

“

I feel called to share my story, even if just one person benefits.”

Jessica
GPA activa grave

“

Sentí la necesidad de compartir mi historia, incluso si solo beneficia a una sola persona.”

Jessica started experiencing a stuffy, runny nose, headaches, and vision loss in 2022. She received temporary relief at urgent care, but her symptoms kept coming back. After developing fatigue, body aches, and weight loss, her doctor knew it was time for more testing. A family member helped her find a local rheumatologist, who confirmed these weren’t just sinus infections—she had GPA. Jessica now has a strong bond with her rheumatologist and openly shares both medical and emotional challenges. Together, they decided to add TAVNEOS® to her treatment in 2022 for severe active GPA. Today, Jessica is balancing her patient journey and career with motherhood in her blended family, and she aspires to help others living with rare diseases.

  • Diagnosed in: 2021

  • Hobbies: Running, reading, attending church with her family

  • Fun Fact: Jessica works in marketing and communications, giving her a unique perspective on advocating for herself

Jessica empezó a presentar congestión y moqueo nasal, dolores de cabeza y pérdida de la visión en el 2022. Encontró alivio temporal en atención de urgencia, pero sus síntomas seguían reapareciendo. Después de desarrollar fatiga, dolor en el cuerpo y perder peso, su médico supo que era el momento de realizar más pruebas. Un familiar la ayudó a encontrar un reumatólogo local que confirmó que no se trataba simplemente de sinusitis, sino que tenía GPA. Jessica ahora mantiene una estrecha relación con su reumatólogo y comparte abiertamente sus desafíos médicos y emocionales. Juntos en el 2022 decidieron añadir TAVNEOS® a su tratamiento para la GPA activa grave. Hoy, Jessica mantiene el equilibrio entre su enfermedad y su vida profesional con su rol como madre de una familia mixta y aspira a ayudar a otras personas que tienen enfermedades raras.

  • Diagnosticada en: 2021

  • Pasatiempos: correr, leer, asistir a la iglesia con su familia

  • Información divertida: Jessica trabaja en marketing y comunicaciones, lo que le proporciona una perspectiva única respecto al autoapoyo

Lorenda
Severe active GPA

“

I’m a strong person, but my experience with ANCA-associated vasculitis has shown me the wisdom in the old-time expression, ‘bend or break.’”

As someone with severe active GPA, Lorenda quickly learned the importance of adapting to whatever changes came her way. With constant, seemingly unrelated symptoms, like sinus issues, coughing, blurry vision, and fatigue, it took years for Lorenda to get her diagnosis. Despite the challenges and exhaustion that she faced, Lorenda found workarounds, like sitting down while doing the dishes. When labs showed impact to her kidneys, she was eager to find something that could help with her disease. Her rheumatologist suggested she add TAVNEOS® to her treatment plan for her severe active GPA. She took some time to read about it, and agreed to add it to her treatment.

  • Diagnosed in: 2021

  • Hobbies: Spending time with her son, reading stories to and playing dolls with her granddaughters

  • Fun Fact: Lorenda and her son love going out and listening to live music together

Stacy
Severe active GPA

“

I became my own biggest advocate. I took control of my treatment, I asked questions and demanded, well, politely pushed, for the answers.”

Stacy was so busy with her kids’ sporting events that she didn’t pay much attention to her sinus issues. But after pneumonia, nose surgery, and leg pain, she started to take her symptoms seriously. It took many visits with different doctors, lots of tests, a research study, and months of uncertainties before she finally received her GPA diagnosis. The disease was under control for a while, until an emergency trip to the hospital indicated she had bleeding in her lungs and her kidney function was worsening — she was relapsing with severe active GPA. Soon after, she and her rheumatologist decided to add TAVNEOS® to her treatment. She has good and bad days, but feels that TAVNEOS® has made a difference. She likes that they’re pills she can take at home.

  • Diagnosed in: 2016

  • Hobbies: RVing and visiting state parks with her husband, enjoying nature, spending time with her kids

  • Fun Fact: Stacy’s daughter was a vasculitis researcher at the same institute where Stacy was diagnosed

Glen

Severe active GPA

Jim

Severe active MPA

Jessica

Severe active GPA

Lorenda

Severe active GPA

Stacy

Severe active GPA

The people above have experience taking TAVNEOS®. They have been compensated for their time. Individual results may vary.

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Signing up to share your story is voluntary for people currently taking TAVNEOS®. Your participation will not affect your medical care and signing up is not a guarantee you will be selected for any TAVNEOS® engagements.

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IMPORTANT SAFETY INFORMATION

What is the most important information
I should know about TAVNEOS?

TAVNEOS can cause serious side effects, including:

  • Liver problems. People taking TAVNEOS may have serious liver problems. Call your healthcare provider right away if you have unexplained symptoms such as:
    • yellowing of your skin or the white part of your eyes (jaundice)
    • pain on the upper right side of your stomach area (abdomen)
    • feeling tired
    • dark or brown (tea colored) urine
    • bleeding or bruising more easily than normal
    • loss of appetite

Your healthcare provider will do blood tests to check how well your liver is working before starting and during your treatment with TAVNEOS.

Do not take TAVNEOS if you are allergic to avacopan or any of the other ingredients in TAVNEOS.

  • Get medical help right away if you experience swollen lips, tongue, throat, trouble swallowing, or difficulty breathing. These could be signs of an allergic reaction. Do not take more TAVNEOS until you have consulted with your healthcare provider.

Before taking TAVNEOS, tell your healthcare provider about all your medical conditions, including if you:

  • have or have had abnormal liver blood tests.
  • have or have had liver problems.
  • have or think you may have hepatitis B or C.
  • have an infection.
  • are pregnant or are planning to become pregnant. It is not known if TAVNEOS will harm your unborn baby. Talk to your healthcare provider if you are pregnant or plan to become pregnant.
  • are breastfeeding or plan to breastfeed. It is not known if TAVNEOS can pass into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you take TAVNEOS.

Tell your healthcare provider about all the other medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. TAVNEOS and certain other medicines may affect each other and cause side effects. Keep a list of the medicines you take and show it to your healthcare provider and pharmacist.

  • Some medicines should not be taken with TAVNEOS.
  • Your healthcare provider may prescribe other medicines to treat your disease.

TAVNEOS may cause serious side effects, including:

  • Liver problems (see above).
  • Serious allergic reactions. Stop taking TAVNEOS and get emergency medical help right away if you have any of the following signs of a serious allergic reaction: shortness of breath or trouble breathing; swollen lips, tongue, throat, or face; trouble swallowing; chest pain; feeling dizzy or faint; moderate or severe abdominal pain, or vomiting.
  • Hepatitis B virus (HBV) reactivation. If you have had HBV or are a carrier of HBV, taking TAVNEOS could cause the virus to become an active infection again. Tell your healthcare provider right away if you get worsening tiredness or yellowing of your skin or the white part of your eyes during treatment with TAVNEOS.
  • Serious infections. Serious infections can happen in people taking TAVNEOS, and these infections can lead to death. The most common serious infections with TAVNEOS were pneumonia and urinary tract infections. People with serious infections should not take TAVNEOS. Tell your healthcare provider right away if you have any symptoms of infection: fever, cold symptoms that do not go away, flu symptoms, pain during urination, or other signs of infection.

The most common side effects of TAVNEOS include:

  • nausea, headache, high blood pressure, diarrhea, vomiting, rash, tiredness, stomach pain, dizziness, increase in blood creatinine, and burning or prickling sensation.

What is TAVNEOS?

TAVNEOS is a prescription medicine that is used with other medicines (such as glucocorticoids) to treat adults with severe active anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (granulomatosis with polyangiitis [GPA], formerly known as Wegener’s granulomatosis, and microscopic polyangiitis [MPA]).

It is not known if TAVNEOS is safe and effective in children under the age of 18.

These are not all the possible side effects of TAVNEOS. Call your doctor for medical advice about side effects. Please see the Full Prescribing Information and Medication Guide for further details.

TAVNEOS is available as a 10 mg capsule.

You are encouraged to report negative side effects to Amgen at 1-833-828-6367 or to the FDA by visiting www.fda.gov/medwatch or calling 1-800-332-1088.

IMPORTANT SAFETY
INFORMATION
What is the most important information I should know about TAVNEOS?

TAVNEOS can cause serious side effects, including: Liver problems. People taking TAVNEOS may have serious liver problems.
Call your healthcare provider right away if you have unexplained symptoms such as: yellowing of your skin or the white part…

IMPORTANT SAFETY INFORMATION What is the most important information I should know about TAVNEOS? TAVNEOS can cause serious side effects, including: Liver problems. People taking TAVNEOS may have serious liver problems. Call your healthcare provider right away if you have unexplained symptoms such as: