Brighter Futures for EoE Patients

Navigating Eosinophilic Esophagitis (EoE): A Decade of Insight & Hope with Dupixent

The following article was sponsored by Sanofi and Regeneron. While I received compensation for this post, all opinions expressed are genuinely my own. This content is not intended to provide medical advice. Please consult with a healthcare professional for any medical concerns.

For those joining us for the first time, allow me to introduce myself. My name is Megan, and I am a mother to a son who received a diagnosis of Eosinophilic Esophagitis, or EoE for short, when he was just one year old. Our family has now been navigating life with this often-misunderstood and chronic inflammatory disease for over a decade. It feels surreal to put that into writing. I vividly recall the raw emotions and immense challenges of those early days; at times, it feels like only a year or two has passed, not over ten!

The Early Challenges of Pediatric EoE: A Mother’s Journey to Diagnosis

Our journey began when my son was a baby. He struggled significantly with eating, a challenge that initially led us to consider feeding therapy. We were puzzled by his frequent gagging and vomiting, which seemed excessive. As time went on, his growth began to decelerate noticeably. He consistently remained in the single-digit percentiles on the growth curve, appearing exceptionally tiny for his age. We wrestled with various possibilities – was it simply picky eating, unaddressed food allergies, or something more profound? The uncertainty eventually grew into deep concern.

One of the most difficult aspects was the absence of obvious signs of discomfort. Paradoxically, he was a fantastic sleeper, which often led doctors to dismiss my persistent feeling that something was amiss. I believe they might have viewed me as an overly anxious first-time mother. Their reassurance that “babies throw up” felt insufficient, as I instinctively knew the volume and frequency of his vomiting were far from normal.

Finally, our persistence led us to a pediatric board-certified allergist who, fortuitously, also specialized in EoE. After a thorough assessment, he expressed his strong suspicion that my son had EoE and recommended a consultation with a pediatric gastroenterologist (GI) for confirmation. We promptly followed this advice. The GI specialist performed an endoscopy, and the biopsy results conclusively confirmed the diagnosis: my son indeed had Eosinophilic Esophagitis.

The diagnosis marked the beginning of a new chapter filled with significant dietary adjustments. We embarked on numerous elimination diets, starting with a severely restricted diet of only ten safe foods. I vividly remember the drive home from the allergist’s office, overwhelmed and in tears. My mind was flooded with daunting questions: What would he eat? How would we possibly manage such a complex dietary regimen? Would this condition impact every other aspect of his life? At that moment, the task ahead seemed utterly insurmountable.

Through countless endoscopies, extensive allergy testing, and numerous doctor’s appointments over the years, we gradually identified his specific food triggers and discovered which foods he could tolerate. Today, we are in a much better, more stable place. However, a lingering concern often crosses my mind: How will he manage this condition independently when he’s older, without his mom constantly watching over him and preparing specialized meals?

Beyond Childhood: Matt’s Adult Experience with EoE and Active Living

Recently, I had the invaluable opportunity to speak with Matt, an individual in his 30s who also lives with EoE, much like my son. It was incredibly insightful to learn about the habits and strategies he has developed to keep his EoE symptoms under control as an adult. I am thrilled to share his inspiring story with all of you!

Matt is an incredibly energetic person who actively participates in triathlons and embraces a vibrant, active lifestyle. This resonated deeply with me, as my son is also passionate about sports, including baseball, basketball, soccer, and skiing. Witnessing Matt thrive with EoE, refusing to let it hinder his passions, was truly uplifting and provided immense hope for my son’s future.

Unlike my son, Matt received his EoE diagnosis later in life. He recounted spending years struggling with persistent swallowing difficulties, constantly wondering about the underlying cause.

He shared a poignant story from a summer camp, around the age my son is now, where he experienced his first significant flare-up. He was trying to eat a peanut butter sandwich but found himself desperately struggling to swallow it. My heart went out to him as he detailed the challenging experience. As a mother, I could only imagine the fear and frustration he must have felt in that moment, far from the comforting presence of his parents.

Over time, Matt learned to intuitively avoid drier, more difficult-to-swallow foods, opting instead for softer, easier-to-manage options like applesauce. He also developed personal coping mechanisms, such as meticulously chewing his food and drinking copious amounts of water during meals to aid the swallowing process.

The turning point arrived when he was 18. A piece of steak became severely lodged in his esophagus, and his usual strategies provided no relief. Fortunately, his mom was there to rush him to the emergency room. Following an endoscopy and a biopsy, he finally received his official diagnosis: Eosinophilic Esophagitis. It was fascinating to hear how our family’s story and Matt’s journey, while distinct in their beginnings, shared striking similarities in the challenges and eventual diagnosis.

Dupixent: A New Horizon for EoE and Beyond

In addition to meticulously avoiding trigger foods, Matt initially managed his EoE symptoms with various medications—a path my son had also explored. He candidly mentioned the significant inconvenience these daily medications posed to his active lifestyle, particularly when traveling.

In 2022, I started hearing exciting news through various online chat groups and publications: a new, approved medication for EoE, called Dupixent (dupilumab), was finally available. The relief and excitement within the EoE community were palpable.

As it turns out, Matt is now on Dupixent, and his experience with the treatment has been overwhelmingly positive. Dupixent (dupilumab) is a prescription medicine approved to treat adults and children aged 1 year and older with EoE, provided they weigh at least 33 pounds (15 kg). Important Safety Information: Do not use Dupixent if you are allergic to dupilumab or to any of its ingredients. The most common side effects in patients with eosinophilic esophagitis include injection site reactions, upper respiratory tract infections, cold sores in your mouth or on your lips, and joint pain (arthralgia). Please refer to the additional Important Safety Information and Full Prescribing Information provided below for comprehensive details.

Megan and her son, looking happy and healthy, demonstrating life with EoE can be managed.

While my son is not currently treated with Dupixent for his EoE, its approval represents a monumental step forward, especially as it’s the only treatment option approved for appropriate children as young as 1 year old. When Sanofi and Regeneron approached me about collaborating on this important message, I enthusiastically agreed. This was particularly meaningful because Dupixent is a medicine we were already familiar with in our family. Although my son doesn’t take it, my husband uses it to treat his uncontrolled, severe eczema. Dupixent is a prescription medicine also used to treat adults and children 6 months of age and older with moderate-to-severe eczema (atopic dermatitis or AD) that is not well controlled with prescription therapies used on the skin (topical), or who cannot use topical therapies. Dupixent can be used with or without topical corticosteroids. Important Safety Information: Do not use Dupixent if you are allergic to dupilumab or to any of its ingredients. The most common side effects in patients with eczema include injection site reactions, eye and eyelid inflammation (including redness, swelling, and itching, sometimes with blurred vision), dry eye, cold sores in your mouth or on your lips, and a high count of a certain white blood cell (eosinophilia). Please refer to the additional Important Safety Information and Full Prescribing Information provided below for comprehensive details.

Finding Hope and Empowering Futures

Our conversation with Matt was truly inspiring. It was incredibly reassuring to witness firsthand that it is indeed possible to effectively manage EoE symptoms and prevent the condition from dictating one’s life—precisely the future I envision and hope for my son. I am immensely grateful for the opportunity to learn about his journey and share these valuable insights.

Megan sharing her family's EoE journey, emphasizing awareness and treatment options.

If you or a loved one are considering whether Dupixent might be a suitable treatment option for EoE, I encourage you to consult with your doctor. You can also explore more detailed information about Dupixent as a treatment for EoE by visiting https://www.dupixent.com/eoe.


IMPORTANT SAFETY INFORMATION & INDICATIONS

Do not use DUPIXENT® if you are allergic to dupilumab or to any of the ingredients in DUPIXENT®.

Before using DUPIXENT, tell your healthcare provider about all your medical conditions, including if you:

  • have eye problems.
  • have a parasitic (helminth) infection.
  • are scheduled to receive any vaccinations. You should not receive a “live vaccine” right before and during treatment with DUPIXENT.
  • are pregnant or plan to become pregnant. It is not known whether DUPIXENT will harm your unborn baby.
    • A pregnancy registry for women who take DUPIXENT during pregnancy collects information about the health of you and your baby. To enroll or get more information call 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/dupixent/.
  • are breastfeeding or plan to breastfeed. It is not known whether DUPIXENT passes into your breast milk.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Especially tell your healthcare provider if you are taking oral, topical, or inhaled corticosteroid medicines; have asthma and use an asthma medicine; or have atopic dermatitis, chronic rhinosinusitis with nasal polyps, eosinophilic esophagitis, prurigo nodularis, or chronic obstructive pulmonary disease and also have asthma. Do not change or stop your other medicines, including corticosteroid medicine or other asthma medicine, without talking to your healthcare provider. This may cause other symptoms that were controlled by those medicines to come back.

DUPIXENT can cause serious side effects, including:

  • Allergic reactions. DUPIXENT can cause allergic reactions that can sometimes be severe. Stop using DUPIXENT and tell your healthcare provider or get emergency help right away if you get any of the following signs or symptoms: breathing problems or wheezing, swelling of the face, lips, mouth, tongue or throat, fainting, dizziness, feeling lightheaded, fast pulse, fever, hives, joint pain, general ill feeling, itching, skin rash, swollen lymph nodes, nausea or vomiting, or cramps in your stomach-area.
  • Eye problems. Tell your healthcare provider if you have any new or worsening eye problems, including eye pain or changes in vision, such as blurred vision. Your healthcare provider may send you to an ophthalmologist for an exam if needed.
  • Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive DUPIXENT. This may happen in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. It is not known whether this is caused by DUPIXENT. Tell your healthcare provider right away if you have: rash, chest pain, worsening shortness of breath, a feeling of pins and needles or numbness of your arms or legs, or persistent fever.
  • Joint aches and pain. Some people who use DUPIXENT have had trouble walking or moving due to their joint symptoms, and in some cases needed to be hospitalized. Tell your healthcare provider about any new or worsening joint symptoms. Your healthcare provider may stop DUPIXENT if you develop joint symptoms.

The most common side effects include:

  • Eczema: injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, dry eye, cold sores in your mouth or on your lips, and high count of a certain white blood cell (eosinophilia).
  • Asthma: injection site reactions, high count of a certain white blood cell (eosinophilia), pain in the throat (oropharyngeal pain), and parasitic (helminth) infections.
  • Chronic Rhinosinusitis with Nasal Polyps: injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, high count of a certain white blood cell (eosinophilia), gastritis, joint pain (arthralgia), trouble sleeping (insomnia), and toothache.
  • Eosinophilic Esophagitis: injection site reactions, upper respiratory tract infections, cold sores in your mouth or on your lips, and joint pain (arthralgia).
  • Prurigo Nodularis: eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, herpes virus infections, common cold symptoms (nasopharyngitis), dizziness, muscle pain, and diarrhea.
  • Chronic Obstructive Pulmonary Disease: injection site reactions, common cold symptoms (nasopharyngitis), high count of a certain white blood cell (eosinophilia), viral infection, back pain, inflammation inside the nose (rhinitis), diarrhea, gastritis, joint pain (arthralgia), toothache, headache, and urinary tract infection.

Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of DUPIXENT. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Use DUPIXENT exactly as prescribed by your healthcare provider. It’s an injection given under the skin (subcutaneous injection). Your healthcare provider will decide if you or your caregiver can inject DUPIXENT. Do not try to prepare and inject DUPIXENT until you or your caregiver have been trained by your healthcare provider. In children 12 years of age and older, it’s recommended DUPIXENT be administered by or under supervision of an adult. In children 6 months to less than 12 years of age, DUPIXENT should be given by a caregiver.

Please see accompanying full Prescribing Information including Patient Information.

INDICATIONS

DUPIXENT is a prescription medicine used:

  • to treat adults and children 6 months of age and older with moderate-to-severe eczema (atopic dermatitis or AD) that is not well controlled with prescription therapies used on the skin (topical), or who cannot use topical therapies. DUPIXENT can be used with or without topical corticosteroids. It is not known if DUPIXENT is safe and effective in children with atopic dermatitis under 6 months of age.
  • with other asthma medicines for the maintenance treatment of moderate-to-severe eosinophilic or oral steroid dependent asthma in adults and children 6 years of age and older whose asthma is not controlled with their current asthma medicines. DUPIXENT helps prevent severe asthma attacks (exacerbations) and can improve your breathing. DUPIXENT may also help reduce the amount of oral corticosteroids you need while preventing severe asthma attacks and improving your breathing. It is not known if DUPIXENT is safe and effective in children with asthma under 6 years of age.
  • with other medicines for the maintenance treatment of chronic rhinosinusitis with nasal polyps (CRSwNP) in adults and children 12 years of age and older whose disease is not controlled. It is not known if DUPIXENT is safe and effective in children with chronic rhinosinusitis with nasal polyps under 12 years of age.
  • to treat adults and children 1 year of age and older with eosinophilic esophagitis (EoE), who weigh at least 33 pounds (15 kg). It is not known if DUPIXENT is safe and effective in children with eosinophilic esophagitis under 1 year of age, or who weigh less than 33 pounds (15 kg).
  • to treat adults with prurigo nodularis (PN). It is not known if DUPIXENT is safe and effective in children with prurigo nodularis under 18 years of age.
  • with other medicines for the maintenance treatment of adults with inadequately controlled chronic obstructive pulmonary disease (COPD) and a high number of blood eosinophils (a type of white blood cell that may contribute to your COPD). DUPIXENT is used to reduce the number of flare-ups (the worsening of your COPD symptoms for several days) and can improve your breathing. It is not known if DUPIXENT is safe and effective in children with chronic obstructive pulmonary disease under 18 years of age.

DUPIXENT is not used to relieve sudden breathing problems and will not replace an inhaled rescue medicine.

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