Finding Myself: Two Patients Share How They Navigate Prurigo Nodularis, a Rare and Serious Skin Condition

For years, prurigo nodularis (PN), a rare and serious skin condition, disrupted the daily lives of Roger and Brooke in both big and small ways. They’re sharing their experiences, challenges, and how seeking care was a turning point.

Everyone knows the frustration of an itch you can’t quite seem to scratch—a pesky mosquito bite, an uncomfortable sweater brushing against your skin, an allergic reaction to that plant you touched. But for people living with prurigo nodularis (PN), what they endure can go so much deeper.

PN is a chronic, inflammatory, and often debilitating skin condition marked by intensely itchy, painful bumps called nodules. Commonly misconstrued, PN can take years to correctly identify—with roughly 87,000 adults diagnosed in the U.S. each year.

For Roger, a 76-year-old musician and father from Nevada, and Brooke, a 55-year-old realtor and mother of two from Maryland, PN brought years of uncertainty, discomfort, and frustration. They want to share their journeys to finding answers, with the hope of helping others who may be going through something similar.

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Meet Roger, a 76-year-old musician and father from Nevada, who is a Dupixent Patient Ambassador.

Unseen and misunderstood

Roger was working abroad in Bangladesh in 2017, and one day purchased a pair of open-toed sandals at a street market. It wasn’t until he walked around in his new footwear for a day that something caught his eye. “I noticed red bumps on my feet and ankles and assumed it was perhaps an allergic reaction to something or insect bites,” he recalls. But the itching and discomfort quickly intensified, and the bumps expanded and eventually spread to his legs, arms, and hands.

Similarly, Brooke’s symptoms began with a few itchy welts on her ankle. “It was summer, and I thought they were bug bites,” she says, as she was used to mosquitoes getting the better of her in the woodsy area where she lived. It was 2018, and she was busy caring for her mother, so she disregarded the welts, expecting them to heal once the season changed. But the itching continued, the bumps didn’t heal, and new ones started appearing. “I just kept thinking, maybe it’ll go away on its own,” Brooke says. “But it didn’t.”

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Meet Brooke, a 55-year-old realtor and mother of two from Maryland, who is a Dupixent Patient Ambassador.

The search for answers

As their symptoms progressed, Roger and Brooke each sought care and were met with a string of misdiagnoses and ineffective treatments. One doctor suspected Roger had dust mites, and two others told him he had scabies. “I was prescribed several medications, but nothing worked for me,” he recalls. “The itch only got worse, and more bumps started appearing and they were even itchier than the first ones. They seemed to thicken and became painful too. It was relentless.”

Brooke, despite coming from a family of physicians, also struggled to get answers, as the nodules spread to her arms and legs. “No one could figure out what was going on, and while at first the itch came and went, eventually I was always itchy,” she says. “It got to a point when I was literally uncomfortable in my own skin.”

Both had entered into the “itch-scratch cycle”—a vicious cycle where intense itching leads to scratching, which over time, leads to the development of itchy nodules. Scratching further irritates or damages the skin and causes more itchiness due, in part, to increased inflammation. This cycle can be relentless and is one of the most challenging aspects of living with the disease. Many patients experience feeling stuck in this loop of discomfort, just like Roger and Brooke.

As their symptoms took a toll, they sought various ways to cope. As a lifelong musician, Roger always loved performing—but the constant itch began to interfere with his live shows, and during performances he started wearing gloves to try and hide the nodules. “At night, I’d wake to blood on my sheets from scratching,” he adds.

Brooke began by only wearing long sleeves, even in warmer weather, worried about comments or assumptions from others about her skin—whether showing houses to clients, or spending time with family and friends. “I was embarrassed,” she says, “It was incredibly frustrating, and I felt a sense of hopelessness.”

A turning point: Finding the right care

Because PN is an uncommon and complex condition, seeing a specialist can be an important step toward getting an accurate diagnosis and exploring treatment options. Dermatologists are trained to recognize the signs of PN and help patients develop a care plan that fits their needs.

For Roger, after nearly a year of searching for answers and undergoing evaluations from several doctors, he found a dermatologist who finally diagnosed him with PN. “I was incredibly happy to finally have a diagnosis because it meant there might be options that would help alleviate the constant itch and pain I was experiencing,” he explains.

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Roger has pursued different interests and careers throughout his life, including designing websites and earning a writing degree, but always came back to the world of music performance.

Brooke’s pivotal moment also came after seeing a dermatologist she hadn’t had an appointment with in a while, who was able to identify PN during her first visit back. “I was relieved to finally have an answer for what was going on, to learn there was a name for what I was experiencing, and that there was potentially a treatment to help me manage this condition.”

As a chronic condition, PN doesn’t simply go away on its own. It can persist for years or even decades, and often requires long-term management. For years, no advanced treatment options were available. That changed in 2022, when the FDA approved DUPIXENT® (dupilumab) injection – 300mg, a prescription medicine, for the treatment of adult patients with PN.

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In her spare time, Brooke enjoys knitting, watching movies, sharing good meals with family and friends, and spending time with her beloved pets.

Dupixent belongs to a category of specialty medicines known as biologics. It targets a source of inflammation under the skin and may help bring balance between skin, nervous system, and immune system—to help keep adult patients one step ahead of PN symptoms. It can help adult patients with PN achieve less itch and clearer skin. In two clinical trials at 24 weeks, adults on Dupixent saw skin clear or almost clear of PN nodules (46% versus 17% not on Dupixent) and had noticeably less itch (59% versus 19% not on Dupixent). At 12 weeks in one of the studies, 37% had less itch versus 22%, respectively. Individual results may vary.

Do not use if you are allergic to dupilumab or any of the ingredients in Dupixent. The most common side effects in patients with PN include eye problems, including eye and eyelid inflammation, redness, swelling, itching, and blurred vision, herpes virus infections, common cold symptoms (nasopharyngitis), dizziness, muscle pain, and diarrhea.

Please see additional Important Safety Information below.

Roger first learned about Dupixent by reading about it online and asked his dermatologist for more information; Brooke’s dermatologist raised it with her when she was diagnosed. Both emphasize how important it was to have open conversations with their doctors about treatment options—and to not be afraid to seek a second, or third, opinion.

Life today

After starting treatment with Dupixent, both Roger and Brooke began noticing meaningful changes. Individual results may vary.

“Gradually, my itch and nodules improved. It was like turning down the volume on a radio,” Roger says. Today, he plays his guitar onstage without gloves and feels at ease, without dealing with nonstop itch. Brooke describes feeling cautious but hopeful from the start. “My skin is clearer and the itching is less intense—I’m more comfortable with my skin again, so I’m less focused on covering it up,” she says. “You shouldn’t have to live feeling uncomfortable with your skin.”

Both hope to inspire others to be their own advocate and not give up. “Be patient, be persistent, and be proactive about your care,” Roger advises. “I tried it all, when I was trying to get to the bottom of what was going on with my skin and find a solution. Some of the most helpful things for me were keeping an ‘itch diary’ to track symptoms, joining support groups to commiserate with, learn from, and encourage each other, and—ultimately—finding a dermatologist who took my symptoms seriously.”

“If something is bothering you, don’t wait to seek help,” Brooke urges. “Living with a chronic condition like PN, it can be easy to say ‘It is what it is’—but don’t give up. The disease doesn’t give up, so neither should you. I’ve learned how important it is to voice my concerns and not downplay symptoms to a dermatologist who really listened.”

Moving forward

PN can feel overwhelming, uncomfortable, and complex—but there are options. If you or someone you love is experiencing persistent itching and skin nodules, talk to a dermatologist and visit Dupixent.com to learn more.

IMPORTANT SAFETY INFORMATION & INDICATION

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 or if you have PN and asthma and use an asthma medicine. 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, including skin 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, skin rash, including rash that looks like a bullseye or painful red or blue bumps under the skin, general ill feeling, itching, swollen lymph nodes, nausea or vomiting, joint pain, 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 eye exam if needed.
  • 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 in patients with prurigo nodularis include eye problems, including eye and eyelid inflammation, redness, swelling, itching, and blurred vision, herpes virus infections, common cold symptoms (nasopharyngitis), dizziness, muscle pain, and diarrhea.

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.

Please see accompanying full Prescribing Information including Patient Information.

INDICATION

DUPIXENT is a prescription medicine used to treat adults with prurigo nodularis (PN). It is not known if DUPIXENT is safe and effective in children with PN under 18 years of age.

DUPIXENT is a registered trademark of Sanofi or an affiliate.

US.DUP.25.08.0088

09/2025