Hope and Treatment Options for Living with Eosinophilic Esophagitis (EoE)

Only the article below was sponsored by Sanofi and Regeneron. Although I was compensated for this post, all opinions are my own. This post is not intended to provide medical advice.

My name is Megan. I’m the mother of a son who was diagnosed with eosinophilic esophagitis (EoE) when he was one year old. We’ve lived with this relatively unknown condition for more than a decade. Some days it still feels as raw as it did at the beginning, and other times it feels like only a few years have passed.

Our journey began when my son was an infant who had persistent trouble eating. At first, we thought he might benefit from feeding therapy, but the gagging and frequent vomiting continued. As time went on, his growth slowed and he fell into the single digits on the growth curve. We worried constantly: was it picky eating, food allergies, or something else?

What made it more confusing was that he didn’t show obvious outward discomfort. He slept well, and several clinicians dismissed my concerns as typical infant behavior. But I knew the frequency of his vomiting was not normal.

Eventually we saw a pediatric board-certified allergist who specialized in EoE and recommended a pediatric gastroenterologist. After an endoscopy and biopsy, the diagnosis was confirmed: EoE.

We began a series of elimination diets and at one point his daily menu was limited to about ten safe foods. Driving home from the allergist that day, I remember crying and feeling overwhelmed by questions: How would he eat? How would we manage daily life? Would this affect him socially or emotionally? It all felt impossible at first.

With time, repeated scopes, and many appointments, we identified his triggers and learned which foods he could tolerate. Today we’re in a much better place, though I still worry about how he’ll manage as an adult without me coordinating his meals and care.

Recently I talked with Matt, an adult who also lives with EoE. He’s in his 30s and active—he runs triathlons—so hearing his experience was encouraging. My son plays several sports, and I loved seeing an example of someone who keeps EoE from limiting his life.

Matt’s diagnosis came later than my son’s. He remembers struggling to swallow as a child and even recalls a first flare-up at summer camp when a peanut butter sandwich became difficult to swallow. Over the years he adjusted his habits—avoiding drier foods, favoring softer options like applesauce, chewing thoroughly, and drinking plenty of water to help food pass.

When he was 18, a piece of steak became lodged in his esophagus. His usual coping strategies didn’t work and, thankfully, his mother took him to the ER. After an endoscopy and biopsy, he was officially diagnosed with EoE.

Matt and my son have different timelines, but similar challenges. Matt initially relied on various medications and found daily dosing to be inconvenient—especially when traveling or maintaining an active lifestyle.

In 2022, the approval of Dupixent (dupilumab) for EoE was notable in online communities and patient groups. Matt is currently using Dupixent and reports a positive experience so far. Dupixent is a prescription medicine used to treat adults and children 1 year of age and older with EoE who weigh at least 33 pounds (15 kg). Do not use Dupixent if you are allergic to dupilumab or any of its ingredients. The most common side effects in EoE patients include injection site reactions, upper respiratory tract infections, cold sores in or around the mouth, and joint pain (arthralgia). Please see the Important Safety Information included below and the full Prescribing Information for details.

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Although my son does not take Dupixent for his EoE, its approval matters because it is the first therapy approved for appropriate children as young as 1 year. When Sanofi and Regeneron approached me about working together, I agreed because we were already familiar with the medication—my husband uses Dupixent for uncontrolled severe eczema. Dupixent is also approved for adults and children 6 months and older with moderate-to-severe eczema that is not controlled by topical therapies, and it can be used with or without topical corticosteroids. Do not use Dupixent if you are allergic to dupilumab or any of the ingredients. The most common side effects in eczema patients include injection site reactions, eye and eyelid inflammation, dry eye, cold sores, and elevated eosinophil counts. Please review the Important Safety Information and Full Prescribing Information below.

Talking with Matt reminded me that it’s possible to manage EoE and maintain an active, fulfilling life—exactly what I hope for my son. Hearing his journey was meaningful and reassuring.

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If you want to discuss whether Dupixent might be appropriate for you or your child, talk with your healthcare provider. They can assess your situation and provide guidance based on current prescribing information and your medical history.

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 or 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 collects information about maternal and infant outcomes for those exposed to DUPIXENT during pregnancy. To enroll or for more information, call 1-877-311-8972 or visit the registry website;
  • are breastfeeding or plan to breastfeed—it is not known whether DUPIXENT passes into 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 provider if you take oral, topical, or inhaled corticosteroids; have asthma and use an asthma medicine; or have atopic dermatitis, chronic rhinosinusitis with nasal polyps, EoE, prurigo nodularis, or COPD and also have asthma. Do not change or stop your other medicines without talking to your healthcare provider.

DUPIXENT can cause serious side effects, including:

  • Allergic reactions. DUPIXENT can cause allergic reactions that may be severe. Stop using DUPIXENT and seek medical help immediately if you experience breathing problems, wheezing, swelling of the face, lips, mouth, tongue, or throat, fainting, dizziness, fast pulse, fever, hives, joint pain, severe itching, rash, swollen lymph nodes, nausea, vomiting, or abdominal cramps.
  • Eye problems. Tell your provider about any new or worsening eye symptoms, including pain or changes in vision. Your provider may refer you to an ophthalmologist.
  • Inflammation of blood vessels (vasculitis). Rarely reported in people with asthma receiving DUPIXENT, sometimes associated with stopping or reducing oral steroids. Contact your provider if you develop rash, chest pain, worsening shortness of breath, numbness or tingling in arms or legs, or persistent fever.
  • Joint aches and pain. Some people have experienced severe joint symptoms that affected mobility and required hospitalization. Report any new or worsening joint symptoms to your healthcare provider; treatment may be stopped if needed.

The most common side effects include:

  • For eczema: injection site reactions, eye and eyelid inflammation, dry eye, cold sores, and high eosinophil counts.
  • For asthma: injection site reactions, eosinophilia, throat pain, and parasitic infections.
  • For chronic rhinosinusitis with nasal polyps: injection site reactions, eye inflammation, eosinophilia, gastritis, joint pain, insomnia, and toothache.
  • For eosinophilic esophagitis: injection site reactions, upper respiratory tract infections, cold sores, and joint pain.
  • For prurigo nodularis: eye inflammation, herpes virus infections, cold-like symptoms, dizziness, muscle pain, and diarrhea.
  • For COPD: injection site reactions, cold-like symptoms, eosinophilia, viral infection, back pain, rhinitis, diarrhea, gastritis, joint pain, toothache, headache, and urinary tract infection.

These are not all the possible side effects. Tell your healthcare provider about any side effect that bothers you or does not go away. You are encouraged to report adverse events to the FDA at www.fda.gov/medwatch or by calling 1-800-FDA-1088.

Use DUPIXENT exactly as prescribed. It is given as a subcutaneous injection. Your provider will determine whether you or your caregiver can administer DUPIXENT and will train you. Do not prepare or inject DUPIXENT until you have been trained. In children 12 years and older, administration should be by or under the supervision of an adult. In children 6 months to under 12 years, DUPIXENT should be given by a caregiver.

Please see the full Prescribing Information and Patient Information provided by the manufacturer for complete details and guidance regarding DUPIXENT and its use.

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