Dupixent for EOE: A Complete Patient Guide

Dupixent for EOE: A Complete Patient Guide

Understanding Your Treatment Options for Eosinophilic Esophagitis

What is Dupixent?

Dupixent (generic name: dupilumab) is a prescription medication that was originally developed for severe asthma and eczema. In May 2022, the FDA approved it specifically for treating Eosinophilic Esophagitis (EOE) in adults and children 12 years and older.

The Basics

Type: Biologic medication (made from living cells)
Administration: Self-injection every week
Target: The immune system inflammation that causes EOE
Manufacturer: Sanofi and Regeneron

Why Dupixent for EOE?

EOE happens when your immune system overreacts to certain triggers, causing inflammation in your esophagus. This inflammation makes it hard to swallow and can cause food to get stuck. Dupixent works by blocking specific proteins (IL-4 and IL-13) that drive this inflammatory response.

How Dupixent Works for EOE

Think of EOE like a fire in your esophagus. Traditional treatments often focus on removing the “fuel” (eliminating trigger foods) or dampening the flames (steroids). Dupixent works differently – it targets the “spark plugs” that start the fire in the first place.

The Science Made Simple

Your immune system produces proteins called IL-4 and IL-13
These proteins tell your body to create inflammation and eosinophils (a type of white blood cell)
Too many eosinophils in your esophagus cause swelling, scarring, and difficulty swallowing
Dupixent blocks IL-4 and IL-13, reducing inflammation at its source

What This Means for You

Less inflammation in your esophagus
Fewer eosinophils where they shouldn’t be
Reduced symptoms like difficulty swallowing
Potential healing of existing damage
May help with related conditions like asthma or eczema

Treatment Details

Dosing Schedule

No loading dose – you start with regular weekly injections
Patients ≥40 kg (88 lbs): 300mg every week
Patients 30-40 kg (66-88 lbs): 300mg every 2 weeks
Patients 15-30 kg (33-66 lbs): 200mg every 2 weeks

Who Can Take It

Adults and adolescents 12 years and older
Weight must be at least 40 kg (88 pounds)
Must have confirmed EOE diagnosis
Should have tried other treatments first (like dietary changes or steroids)

Forms Available

Pre-filled syringe: More control over injection speed
Auto-injector pen: Easier to use but faster injection
Healthcare provider administration: Available if self-injection isn’t possible

FDA Approval History

Dupixent (dupilumab) was first approved by the FDA on March 28, 2017, for moderate-to-severe atopic dermatitis in adults. Since then, it has received additional approvals:

March 28, 2017: Moderate-to-severe atopic dermatitis in adults
October 19, 2018: Moderate-to-severe asthma
March 11, 2019: Moderate-to-severe atopic dermatitis in adolescents (12-17 years)
June 26, 2019: Chronic rhinosinusitis with nasal polyposis (CRSwNP)
May 26, 2020: Moderate-to-severe atopic dermatitis in children (6-11 years)
October 20, 2021: Moderate-to-severe asthma in children (6-11 years)
May 20, 2022: Eosinophilic esophagitis (EoE) in adults and adolescents (12+ years)
June 7, 2022: Moderate-to-severe atopic dermatitis in children (6 months-5 years)
September 29, 2022: Prurigo nodularis in adults
January 25, 2024: Eosinophilic esophagitis (EoE) in children (1+ years)
September 27, 2024: COPD with eosinophilic phenotype
September 13, 2024: Chronic rhinosinusitis with nasal polyps in adolescents
April 18, 2025: Chronic spontaneous urticaria (CSU) in adults and adolescents (12+ years)
June 20, 2025: Bullous pemphigoid (BP)

Dupixent is co-developed by Regeneron Pharmaceuticals and Sanofi.

What to Expect: Timeline

First Month (Weeks 1-4)

Week 1: First injection – you might feel tired or have injection site reactions
Week 2: Second weekly injection – some patients notice early improvements in swallowing
Week 3: Third weekly injection – your body is continuing to adjust to the medication
Week 4: Fourth weekly injection – early improvements may become more noticeable

Months 2-3

Most common timeframe for noticing significant improvement
Swallowing may become easier
Food may feel less likely to get stuck
Some patients can reintroduce previously problematic foods

Months 4-6

Continued improvement in symptoms
Your doctor may schedule an endoscopy to check progress
Many patients report feeling “normal” again with eating

Long-term (6+ months)

Sustained improvement is common
Some patients achieve complete remission
Regular monitoring continues with your healthcare team

Important Notes

Everyone responds differently – some see changes in weeks, others need months
Don’t stop early – it can take time to see full benefits
Missing doses can affect how well it works

Side Effects: What You Should Know

Most Common Side Effects (10% or more of patients)

Injection site reactions: Redness, swelling, itching, or pain where you inject
Upper respiratory infections: Cold-like symptoms
Headache: Usually mild and temporary

Less Common but Notable Side Effects

Eye problems: Dry eyes, itching, or conjunctivitis
Joint pain: Usually temporary and mild
Fatigue: Feeling more tired than usual
Muscle pain: Similar to mild flu-like symptoms

Rare but Serious Side Effects

Severe allergic reactions: Trouble breathing, swelling of face/throat, severe rash
Eye inflammation: Severe eye pain, vision changes, sensitivity to light
Parasitic infections: More likely if you travel to certain areas

What Patients Actually Experience

Based on real patient reports, the majority of people taking Dupixent experience no significant side effects. The most common complaint is injection site discomfort, which often improves with proper technique.

Managing Side Effects

Injection site reactions: Ice before and after, rotate injection sites
Dry eyes: Use preservative-free eye drops
Fatigue: Usually improves after the first few doses
Joint pain: Often temporary and resolves within weeks

Administration Guide

Getting Started

Training: Your healthcare provider or pharmacist will teach you proper technique
Supplies: You’ll need alcohol wipes, cotton balls, and a sharps container
Storage: Keep in refrigerator (36-46°F) until ready to use

Proper Storage Guidelines

Refrigerated Storage (Recommended):

Store between 36°F to 46°F (2°C to 8°C)
Keep in original carton to protect from light
Do not freeze or shake

Room Temperature Storage (When Necessary):

Can be stored at room temperature up to 77°F (25°C)
Maximum of 14 days at room temperature
Must be used within 14-day window or discarded
Important: Cannot be returned to refrigerator once warmed

Storage Safety Tips:

Never store above 77°F (25°C)
Protect from heat and direct sunlight
Never microwave or use heat to warm
Always refer to package instructions

Step-by-Step Injection Process

Before You Inject

Remove from refrigerator 30-45 minutes before injection
Let warm to room temperature naturally (never use heat)
Check expiration date and look for particles or cloudiness
Wash hands thoroughly
Choose injection site (rotate between locations)

Injection Sites

Belly (abdomen): Most comfortable for many patients – avoid 2 inches around navel
Thigh: Front/outer part of upper thigh
Upper arm: Only if someone else is giving the injection

During Injection

Clean injection site with alcohol wipe
Pinch skin gently
Insert needle at 45-degree angle
Inject slowly (10-15 seconds) – this reduces pain significantly
Remove needle and apply gentle pressure

After Injection

Dispose of needle in sharps container immediately
Apply bandage if needed
Record date and location in your tracking log

Pain Management Tips

Let medication warm up – cold injections hurt more
Inject slowly – rushing increases pain
Use belly instead of thigh – generally less painful
Ice for 10 minutes before injection (remove just before injecting)
Topical numbing cream – ask your doctor about prescription options
Relax – tension makes injection more painful

Cost and Insurance

Understanding the Cost

List price: Approximately $3,000-4,000 per month
With insurance: Varies widely based on coverage
Patient assistance: Multiple programs available to help

Insurance Coverage

Most insurance plans cover Dupixent for EOE
Prior authorization is usually required
Step therapy may be needed (trying other treatments first)
Appeal process is available if initially denied

Financial Assistance Programs

Dupixent MyWay Program

Eligible patients may pay as little as $10 per prescription
Income limits apply for assistance
Covers both insured and uninsured patients
Easy online application process

Patient Assistance Programs

Sanofi Patient Connection: For uninsured patients
Needymeds: Additional resources for financial help
Foundation support: Various foundations offer grants

Tips for Managing Costs

Work with your doctor to document medical necessity
Keep detailed records of previous treatments tried
Apply for assistance programs before you need them
Consider specialty pharmacies that may offer support services

Real Patient Experiences

Success Stories

Sarah, 34, Teacher: “I was scared of the injections at first, but after 3 months on Dupixent, I ate pizza for the first time in 5 years. The weekly shot stings for about 10 seconds, but I can eat normally now. Worth every second of discomfort.”

Mike, 28, Construction Worker: “I used to carry liquid with every meal because food would get stuck. Four months on Dupixent and I haven’t had food stuck once. I do my weekly injection in my belly with the pre-filled syringe – barely hurts at all.”

Jennifer, Parent of 15-year-old: “My son went from eating 6 foods to eating almost everything. Yes, the weekly shot hurts him, but he tells me ‘Mom, it’s 10 seconds so I can eat with my friends.’ We use numbing cream and ice, and he’s gotten used to the routine.”

Honest Challenges

David, 42, Accountant: “The first few injections were really painful. I almost quit twice. But my doctor helped me switch techniques – warmer medication, slower injection, belly instead of thigh. Now it’s manageable, and my EOE is in remission.”

Lisa, 39, Nurse: “I had dry eyes for the first two months. My doctor prescribed special eye drops and it resolved. The improvement in my swallowing made it worth dealing with the side effect.”

What Patients Wish They’d Known

“Let the medication warm up longer than you think”
“The belly really is less painful than the thigh”
“It’s okay to go slow – don’t rush the injection”
“Keep a food diary to track your progress”
“Don’t expect miracles overnight – give it time”

Frequently Asked Questions

About Starting Treatment

Q: How do I know if Dupixent is right for me? A: Dupixent is typically recommended for patients who haven’t responded well to dietary changes or steroid treatments. Your doctor will consider your EOE severity, previous treatments, and overall health.

Q: Can I take Dupixent with other EOE treatments? A: Yes, many patients continue dietary modifications or use acid-reducing medications alongside Dupixent. Always discuss with your doctor before changing any treatments.

Q: What if I’m afraid of needles? A: Many patients share this fear. Options include having a healthcare provider give injections, using numbing cream, or working with a counselor to overcome needle phobia.

About Daily Life

Q: Can I travel with Dupixent? A: Yes, but you’ll need to plan ahead. Carry a doctor’s letter, keep medication in original packaging, and bring a travel cooler for longer trips.

Q: Will I need to take Dupixent forever? A: This is still being studied. Some patients maintain improvement after stopping, while others need continuous treatment. Discuss long-term plans with your doctor.

Q: Can I drink alcohol while taking Dupixent? A: There’s no specific interaction between Dupixent and alcohol, but alcohol can worsen GERD symptoms that often accompany EOE.

About Safety

Q: Can I get vaccines while taking Dupixent? A: Most vaccines are safe, but avoid live vaccines. Talk to your doctor about timing, especially for vaccines like flu shots.

Q: What if I get pregnant while taking Dupixent? A: Dupixent is pregnancy category B, meaning it’s generally considered safe, but always discuss with your doctor immediately.

Q: Can children take Dupixent? A: Yes, it’s approved for children 12 and older who weigh at least 88 pounds. Pediatric dosing may be different.

About Side Effects

Q: What should I do if I have a severe reaction? A: Seek emergency medical care immediately if you experience trouble breathing, severe swelling, or widespread rash.

Q: Will the injection site reactions get better over time? A: Yes, most patients find that injection site reactions decrease as their body adjusts to the medication.

Q: Can Dupixent cause depression or mood changes? A: This isn’t a common side effect, but some patients report mood changes. Discuss any concerns with your doctor.

When to Contact Your Doctor

Call Immediately If You Experience:

Severe allergic reaction: Difficulty breathing, swelling of face/throat, widespread rash
Severe eye problems: Sudden vision changes, severe eye pain, sensitivity to light
Signs of serious infection: High fever, persistent cough, unusual fatigue

Call Within 24 Hours If You Experience:

Persistent injection site reactions: Worsening redness, warmth, or swelling after 48 hours
New or worsening eye symptoms: Persistent dry eyes, itching, or discharge
Unusual fatigue or weakness: That doesn’t improve after the first few doses

Discuss at Your Next Appointment:

Changes in EOE symptoms: Both improvements and any worsening
Side effects: Even mild ones should be documented
Questions about technique: If injections are consistently painful
Travel plans: Especially to areas with different disease risks

Regular Monitoring

Follow-up appointments: Usually every 3-6 months
Endoscopy: To check treatment progress
Blood tests: May be needed to monitor your response

Resources and Support

Official Resources

Dupixent MyWay Program

Website: DupixentMyWay.com
Phone: 1-844-DUPIXENT (1-844-387-4936)
Services: Patient support, financial assistance, injection training

FDA Drug Information

Website: fda.gov
Search for “dupilumab” for official prescribing information

Patient Organizations

American Partnership for Eosinophilic Disorders (APFED)

Website: apfed.org
Resources: Patient education, support groups, research updates
Phone: 713-493-7749

Campaign Urging Research for Eosinophilic Disease (CURED)

Website: curedfoundation.org
Focus: Research funding and patient advocacy

Online Communities

Facebook Groups

“EOE Support Group”
“Dupixent Users Support Group”
“Eosinophilic Esophagitis Support”

Reddit Communities

r/EosinophilicEsophagitis
r/Dupixent

Professional Support

Find a Specialist

Gastroenterologists: Specialists in digestive disorders
Allergists/Immunologists: Specialists in immune system disorders
Registered Dietitians: Help with dietary management

Specialty Pharmacies

Many offer injection training and ongoing support
Insurance often covers specialty pharmacy services
Can help coordinate refills and prior authorizations

Educational Materials

Injection Training Videos

Available through Dupixent MyWay program
YouTube has patient-created tutorials (always verify with healthcare provider)

Printable Resources

Injection log templates
Food diary templates
Symptom tracking sheets

Final Thoughts

Starting Dupixent for EOE can feel overwhelming, but you’re not alone in this journey. Thousands of patients have successfully used this medication to regain control over their eating and their lives.

Remember:

Every patient’s experience is different – don’t compare your progress to others
It takes time – most patients see gradual improvement over weeks to months
Communication is key – stay in close contact with your healthcare team
Support is available – from patient programs, online communities, and healthcare providers

You’ve Got This:

The decision to start Dupixent shows you’re taking control of your health. While the injections might seem daunting at first, most patients find they quickly become routine. Focus on the goal: eating without fear, enjoying meals with family and friends, and living your life to the fullest.

Your healthcare team is there to support you every step of the way. Don’t hesitate to reach out with questions, concerns, or just to share your progress.

This document is for educational purposes only and should not replace professional medical advice. Always consult with your healthcare provider before starting, stopping, or changing any medication.