Hope for Those Living with 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.

For those new here let me introduce myself. My name is Megan and I am the mother of a son who was diagnosed with eosinophilic esophagitis (EoE for short) when he was one year old. We’ve been living with this fairly unknown disease for over a decade now. It’s crazy to write that. I remember how fresh and raw it was at the beginning and sometimes it seems like just a year or two ago, not over ten!

It all started when my son was a baby and he had trouble eating. At first, we thought maybe he just needed feeding therapy, and so we tried that. We couldn’t figure out why he would gag and throw up so much. Then, his growth started slowing down. He was in the single digits on the growth curve and was just tiny. We didn’t know if it was picky eating, food allergies or what was going on and we eventually began to worry.

It was hard because he wasn’t showing obvious signs of discomfort. He slept so well that doctors would dismiss my nagging feeling that something was wrong. I believe they thought I was an overzealous first-time mom. They would say that it was normal for babies to throw up, but I knew the amount that he did just wasn’t right. 

Finally, we got in to see a pediatric board-certified allergist and he happened to also specialize in EoE. He told us he thought that’s what my son had and to see a pediatric gastroenterologist (GI) to confirm. We did so and the GI performed an endoscopy and sure enough, my son did have EoE.

We then started on many elimination diets, with his diet only having ten safe foods to begin. I remember driving home from the allergist’s office just crying and crying. I was plagued with questions like: What would he eat? How would we manage it? Would it effect other areas of his life? It seemed like an insurmountable task at the time.

Thankfully, through multiple scopes and lots of doctor’s appointments, we learned what his triggers are, and which foods he could tolerate. We’re in a good place now, but I still sometimes wonder how he’ll manage this once he’s older and he doesn’t have a mom looking out for him constantly and cooking specialty foods for him. 

I recently had the opportunity to talk to Matt who lives with EoE like my son. He’s now in his 30’s, so it was helpful to get a glimpse of habits he’s formed to keep his EoE symptoms under control. I’m excited to share his story with all of you! 

Matt is an energetic guy who runs triathlons and has an active lifestyle, which I loved hearing because my son plays many sports: baseball, basketball, soccer and skiing. I enjoyed seeing that Matt has EoE and doesn’t let it get in the way of the things he cares about. 

Unlike my son, Matt received his diagnosis later in life and recalls spending years wondering why he had difficulty swallowing. 

He told me a story from summer camp when he was around my son’s age where he remembers his first flareup. He was eating a peanut butter sandwich and was struggling to get it down. My heart went out to him as he detailed the experience! As a mother, I could only imagine how he must have felt in that moment being away from his parents.

He went on to tell me that over time, he learned to avoid dryer foods and stick to softer options like applesauce. He would also use coping mechanisms like chewing food really well and drinking lots of water to help with swallowing. 

One day when he was 18, a piece of steak got stuck in his esophagus and his usual methods weren’t working. Thankfully his mom was there that time to take him to the ER! One endoscopy and a biopsy later, he received his official diagnosis: EoE. 

It was so interesting to see how our stories differed and how they were similar! In addition to avoiding trigger foods, Matt initially managed his symptoms with different medications (which my son has tried before too). He mentioned what a pain it was for his active lifestyle to have to take the medicines every day—especially when traveling.

In 2022, I had heard in various chat groups and online publications about the exciting news that there was finally an approved medication for EoE called Dupixent (dupilumab) and how everyone was so thrilled about it. 

Come to find out, Matt is on Dupixent, and his experience taking it has been positive so far. Dupixent (dupilumab) 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 if you are allergic to dupilumab or to any of the ingredients in Dupixent. 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 see additional Important Safety Information throughout and Full Prescribing Information below.

While my son isn’t treated with Dupixent for his EoE, the approval is significant as it’s the only treatment option approved for appropriate children as young as 1 year old. When Sanofi and Regeneron reached out to see if I wanted to work together, I was all about it. Especially because Dupixent was a medicine that we were already familiar with. While my son doesn’t take it, my husband does to treat his uncontrolled severe eczema. 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. Do not use if you are allergic to dupilumab or to any of the ingredients in Dupixent. 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 high count of a certain white blood cell (eosinophilia). Please see additional Important Safety Information throughout and Full Prescribing Information below.

It was really fun to talk to Matt and to see that it is possible to manage your symptoms and not let EoE hold you back—my exact hopes for my son. I’m grateful for the chance to hear about his journey!

If you’d like to see if Dupixent may be a fit, talk to your doctor, or you can learn more about Dupixent as a treatment option for EoE at https://www.dupixent.com/eoe. 

IMPORTANT SAFETY INFORMATION & INDICATIONS

Do not use 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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