Living with moderate-to-severe eczema? You’re not alone

DISCLOSURE NOTICE: Insights for this article have been provided via interview by Patricia Cervini and Alison Piluso, who live with moderate-to-severe atopic dermatitis and treat their condition with a non-Pfizer medication, and were paid as consultants of Pfizer.

There have been many misconceptions surrounding moderate-to-severe atopic dermatitis (AD) or eczema — that it’s just a rash or that it’s contagious.

To avoid feeling judged by others, individuals with eczema often go to great lengths to hide their skin or symptoms under baggy clothing or might feel hesitant to talk about what they’re going through.  

Thankfully though, the conversation around eczema has become a lot more open as people like Alison Piluso and Patricia Cervini share their real-life experiences to raise awareness about the condition and reach others in the eczema community.

Like many people with moderate-to-severe AD, both Alison and Patricia were diagnosed early in life. 80% of those diagnosed with AD as a child experience symptoms before the age of 6.¹ 

They have both had times when AD impacted their work and social lives. However, despite the challenges, they have found what works best for them in managing their symptoms.  

Understanding moderate-to-severe AD

Atopic dermatitis, also known as eczema, is a chronic disease associated with skin inflammation. In moderate-to-severe AD, symptoms can include intense itching, inflamed skin that looks red or discolored depending on skin tone, oozing skin, thickening of the skin, and scaly skin caused by an abnormal immune response. At times, it can feel like an ever-present itch, the discomfort of which can be so intense that it can be hard to concentrate on anything else.

“It can affect a person entirely — everything from their relationships to their activities and work,” said Alison.

Growing up in the 1990s, doctors told her that her condition was caused by dry skin, and she should take extra care to moisturize. “I just itched like crazy, and I moisturized like crazy,” she said. She struggled to find relief from the itchiness. “When you can’t stop scratching due to the intense itching, you’re creating scratch marks that bleed which can ruin your clothing.”

Even at night, there were times when she would scratch while she was sleeping to the point of bleeding. “You know that Egyptian cotton sheet set that you want? Why get it, so you can scratch in the middle of the night and destroy it?”

Some of her earliest memories of having eczema are being very sensitive to heat and sweat. “Sweat is a major trigger for me,” she said. Growing up playing soccer, Alison used to run to her parents’ car so she could rip off her shin guards to scratch her legs. The itch was so overwhelming that she would continue furiously scratching even after her legs had begun bleeding.

Trying to identify her triggers, such as laundry detergents, household cleaners, beauty products, and even jewelry, has been a large part of her day-to-day life with AD. While trying to find relief, Alison tried topical steroid ointments that left her skin feeling greasy. She was told the ointments should work, but they didn’t work for her as well as she had hoped.

“Over time you get what I refer to as the junk drawer of lotions and products,” she said. “You keep saying maybe it didn’t work this time because I was stressed out.” She described feeling like she was hitting a wall at times when it came to trying to find different fabrics or metals for jewelry that weren’t irritating to her skin. Being a self-professed “girly-girl,” she felt like she had to walk away from some things that she loved.

A common feeling among those with eczema is the need to hide or cover up. “I was very isolated as a child, I always wore long sleeve shirts and long pants,” she said.

Now, in her early 30s, Alison works as the front office supervisor for a dermatology clinic in the Portland, Oregon area and, inspired by her background with this condition has become an active voice in the eczema community, supported by the National Eczema Association (NEA).

Alison feels a sense of pride being open and honest. “I feel powerful when I talk about it,” she said. “Be your own advocate because, when you find a healthcare provider that’s really on your side, you’re going to have a better chance to thrive.”

Even though it’s still painful for her to think about the difficulties she has faced — from being embarrassed about her skin to feeling misunderstood by her peers— Alison feels grateful to have had the support of her family and friends.

Learning to advocate and support others

On the opposite side of the country, in Washington, D.C., Patricia had a different yet no less challenging experience with moderate-to-severe atopic dermatitis.

“I’ve had it off and on my entire life,” she said. “I can go years without any flares, so it’s really fascinating to me when I hear other people’s stories because there’s no rhyme or reason as to why for most people.”

In her late 20s, Patricia had a major flare-up that responded well to topical treatments.

“I never gave it that much thought or really ever talked about it,” she explained.

But going into her 50s, things changed for Patricia when a patch of itchy skin didn’t go away with the same treatments she’d used in the past and continued to get worse and spread.

“I would wake up and there’d be blood all over the sheets because I’d been scratching in my sleep,” she said. “Nothing was helping, and I was trying every lotion, tincture, ointment, anything that came across my [social media] feed—it was starting to get a little terrifying.”

Over the next months, Patricia described the frustration of trying to find treatment as “jumping through hoops.” The itch remained unrelenting. “Everything I had tried [hadn’t worked and] I’d had two infections in my legs from all of the scratching and the bleeding, and that had me worried,” she said. “I was like, this is not sustainable to have infection after infection.” It was getting to the point where even her job performance was being impacted.

“It was probably a year and a half of the infections, the bleeding, or [my husband would] say you scratched all night in your sleep. You’re not even aware you’re doing it until you wake up and you’ve got blood under your fingernails and there’s blood on your clothing.” Finally, she found a non-Pfizer treatment that started working for her eczema.

“There are dermatologists, and then there are [moderate-to-severe AD] dermatologists,” she said. “You want that dermatologist who will go to bat for you and fight for you and be your advocate.”

By becoming an ambassador with NEA, she has gained a community and discovered the importance of sharing her story. “When I told friends that I was going [to NEA Eczema Expo], they were like, oh, I didn’t even know you had eczema,” she said. She realized she hadn’t just been covering up her skin with clothing, but that she had been hiding a part of her life from those closest to her. For her, it had been a personal, private battle, but finding NEA introduced her to a network filled with unconditional love and support. “Everyone’s been down this road. Some people were flaring at the time of the Expo. For other people, it had been a while since they had a flare.”

With the strength of the eczema community behind her, she began feeling more comfortable in her skin. On a hot summer day, she could wear shorts regardless of being “at my worst when my legs were really, really bad.” She said, “I don’t want to hide behind it. It’s an opportunity to educate.”

She stresses that everyone’s journey with AD is incredibly different. Pinpointing her specific triggers, for example, has been tough. She finds the hard water and muggy summers in D.C., where she lives, can exacerbate her AD.

Through NEA, she has also learned from others, such as meeting individuals who have ended up in the emergency room from infections they got from itching.

“Another thing I learned, which was so eye-opening, is that the research is really out there and there are other things now that weren’t available even three and four years ago,” she said.

Becoming voices for awareness

Despite their paths varying greatly, both Alison and Patricia agree there is still a need for increased awareness and advocacy.

“I feel like the awareness is definitely getting there, when you think about the skin being the largest organ in the body,” said Patricia, who wants people to know how common the condition is, since some people may be hesitant to talk about eczema or be worried about the stigma. Since the 1990s, the prevalence of moderate-to-severe AD among children has nearly doubled from 8% to 15%, and among adults impacted, nearly 40% have moderate-to-severe eczema.²

Putting it quite simply, Alison said, “You should be able to feel good in your skin.”

For those with moderate-to-severe AD, the hope is that having more ‘good’ days than bad with your skin condition will become a reality. And particularly, for young people with moderate-to-severe AD, research and resources already seem to be improving from what Alison faced in her childhood and teens. While both Alison and Patricia’s conditions are under control with the non-Pfizer treatments they’re currently taking, there are many who are still searching for the best treatment option for them.

Expanding treatment options and understanding

With a greater understanding of the underlying causes of eczema and more treatment options available, healthcare professionals now have more options to tailor treatment plans to the appropriate individual, including CIBINQO (abrocitinib), a Janus kinase (JAK) inhibitor and once-daily oral pill for moderate-to-severe AD. Recently, CIBINQO has been approved to include treating adolescents 12 to 17 years old, whereas previously it had been only approved to treat adults. It can be prescribed for patients with moderate-to-severe eczema who didn’t respond to previous treatments and when other treatments, including oral or injected medicines, haven’t worked well or are not right for them.

Both Alison and Patricia are doing well with the treatments they are on, which are not manufactured by Pfizer. CIBINQO may be an appropriate option for patients who are uncontrolled on their current treatment.

“We are in an incredibly exciting time for eczema. The FDA has recently approved a supplemental new drug application to expand the use of CIBINQO for adolescents with moderate-to-severe atopic dermatitis. New treatment options offer another opportunity to talk to our patients, to see how they are doing and, for those who are not well-controlled, to discuss the possibility of a different approach,” said Dr. Peter Lio, a practicing dermatologist at Medical Dermatology Associates of Chicago who also serves as an emeritus member of the National Eczema Association’s Scientific and Medical Advisory Council and current member of the Board of Directors. “In the old days, I just wanted to ease my patients’ suffering to give them some relief. Now my goal is for my patients to have clear or almost clear skin, if possible, with less itch.”

Like many medicines, CIBINQO may not be right for everyone. Dermatologists will need to talk with their patients about the serious risks as well as conduct blood testing prior to starting on CIBINQO. Serious risks include, serious infections, increased risk of death, cancer and immune system problems, major cardiovascular events, and blood clots. They will also need to monitor them during treatment with blood testing to monitor blood cell counts, adjust treatment if necessary, and perform periodic skin checks. Lab tests are used to help evaluate overall health and screen for infections.  

In addition to the serious potential side effects, the most common side effects seen in the clinical trials include common cold, nausea, headache, herpes simplex including cold sores, increased blood level of creatine phosphokinase, dizziness, urinary tract infection, tiredness, acne, vomiting, mouth and throat pain, flu, stomach flu, bacterial skin infection, high blood pressure, allergic skin rash to something you contacted, stomach pain, shingles, and low platelet count. These are not all of the possible side effects of CIBINQO.

Please refer to the important safety information below, including BOXED WARNING.

For patients and doctors, the outlook on moderate-to-severe AD is looking brighter — thanks to having more treatment options available. Now, if one treatment stops working, which can be a great fear for patients, there are more options available to consider and try.  

IMPORTANT SAFETY INFORMATION AND INDICATION

CIBINQO may cause serious side effects, including:

Serious infections. CIBINQO can lower your immune system’s ability to fight infections. Do not start CIBINQO if you have any kind of infection unless your healthcare provider tells you it is okay. Serious infections, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body, have occurred in people taking CIBINQO or other similar medicines. Some people have been hospitalized or died from these infections. Your risk of developing shingles may increase while taking CIBINQO.

Your healthcare provider should test you for TB before treatment with CIBINQO and monitor you closely for signs and symptoms of TB infection during treatment.

Before and after starting CIBINQO, tell your doctor right away if you have an infection, are being treated for one, or have symptoms of an infection, including:

• fever, sweating, or chills
• muscle aches
• cough or shortness of breath
• blood in your phlegm
• weight loss
• warm, red, or painful skin or sores on your body
• diarrhea or stomach pain
• burning when you urinate or urinating more often than usual
• feeling very tired

CIBINQO can make you more likely to get infections or worsen infections you have. If you get a serious infection, your healthcare provider may stop treatment with CIBINQO until your infection is controlled.

There is an increased risk of death in people 50 years and older who have at least one heart disease (cardiovascular) risk factor and are taking a Janus kinase (JAK) inhibitor (such as CIBINQO).

Cancer and immune system problems. CIBINQO may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers, including skin cancers, can happen. People, especially current or past smokers, have a higher risk of certain cancers, including lymphoma and lung cancers, while taking a JAK inhibitor. Follow your healthcare provider’s advice about having your skin checked for skin cancer during treatment. Limit the amount of time you spend in sunlight and avoid using tanning beds or sunlamps. When in the sun, wear protective clothing and use SPF 30+ sunscreen. This is especially important if you have very fair skin or a family history of skin cancer. Tell your healthcare provider if you have ever had any type of cancer.

There is an increased risk of major cardiovascular (CV) events such as heart attack, stroke or death in people 50 years and older who have at least one heart disease (CV) risk factor and are taking a JAK inhibitor, especially for current or past smokers.

Some people taking CIBINQO have had major cardiovascular events.

Get emergency help right away if you develop any symptoms of a heart attack or stroke while taking CIBINQO, including:

• discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back
• severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw
• pain or discomfort in your arms, back, neck, jaw, or stomach
• weakness in one part or on one side of your body
• slurred speech
• shortness of breath with or without chest discomfort
• breaking out in a cold sweat
• nausea or vomiting
• feeling lightheaded

Blood clots. Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) can happen in some people taking CIBINQO. This may be life-threatening. Blood clots in the veins of the legs and lungs have happened more often in people 50 years and older, with at least one heart disease (CV) risk factor, taking a JAK inhibitor. Tell your healthcare provider if you have had blood clots in the veins of your legs or lungs in the past.

Stop taking CIBINQO and get medical help right away if you have any signs and symptoms of blood clots including swelling, pain, or tenderness in one or both legs; sudden, unexplained chest or upper back pain; shortness of breath or difficulty breathing.

Changes in certain laboratory test results. Your doctor should do blood tests before and during treatment with CIBINQO to check your lymphocyte, neutrophil, red blood cell, and platelet counts. You should not take CIBINQO if these counts are too low. Your healthcare provider may stop treatment for a period of time if there are changes in these blood test results.

Increased cholesterol levels. You may also have increases in the amount of fat found in your blood. Your doctor should check your cholesterol about 4 weeks after you start CIBINQO and then as needed. 

During the first 3 months of treatment with CIBINQO, do not take medicines that prevent blood clots except low-dose aspirin (≤81 mg daily), if prescribed.

Before taking CIBINQO, tell your healthcare provider if you:

• have an infection, are being treated for one, or have one that won't go away or keeps returning
• have diabetes, chronic lung disease, HIV, or a weak immune system
• have TB or have been in close contact with someone with TB
• have had shingles (herpes zoster)
• have had hepatitis B or hepatitis C
• live, have lived, or traveled to certain areas (such as Ohio & Mississippi River Valleys and the Southwest) where there is an increased chance for getting certain kinds of fungal infections. These infections may happen or worsen when taking CIBINQO. Ask your healthcare provider if you're unsure if you have lived in an area where these infections are common
• have had any type of cancer
• have had blood clots in the veins of your legs or lungs
• are a current or past smoker
• have had a heart attack, other heart problems, or stroke
• have kidney or liver problems
• have abnormal blood tests (low platelet count or white blood cell count)
• have high levels of fat in your blood (high cholesterol)
• have any eye problems, including cataracts or retinal detachment
• have recently received or are scheduled to receive any vaccinations. People who take CIBINQO should not receive live vaccines
• are or plan to become pregnant. It is not known if CIBINQO will harm your unborn baby. Pfizer has a Pregnancy Exposure Registry for pregnant women who take CIBINQO to check your health and the health of your baby. If you are pregnant or become pregnant while taking CIBINQO, ask your healthcare provider how you can join this pregnancy registry, call 1-877-311-3770, or visit www.CIBINQOPregnancyRegistry.com to enroll
• are breastfeeding or plan to breastfeed. It is not known if CIBINQO passes into your breast milk. You should not take CIBINQO while breastfeeding
• are taking other medications, including prescription and over-the-counter medicines, vitamins, and herbal supplements. CIBINQO and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take aspirin or any antiplatelet therapies. Ask your healthcare provider if you are unsure

The most common side effects of CIBINQO include common cold, nausea, headache, herpes simplex including cold sores, increased blood level of creatine phosphokinase, dizziness, urinary tract infection, tiredness, acne, vomiting, mouth and throat pain, flu, stomach flu, bacterial skin infection, high blood pressure, allergic skin rash to something you contacted, stomach pain, shingles, and low platelet count.

Separation or tear to the lining of the back part of the eye (retinal detachment) has happened in people treated with CIBINQO. Call your healthcare provider right away if you have any sudden changes in your vision.

CIBINQO may cause fertility problems in females, which may affect the ability of females to get pregnant. Talk to your healthcare provider if you have concerns about fertility.

These are not all of the possible side effects of CIBINQO.

What is CIBINQO (si-BINK-oh)?

CIBINQO (abrocitinib) is a prescription medicine to treat adults and children 12 years of age and older with moderate-to-severe eczema (atopic dermatitis) that did not respond to other treatment and is not well controlled with prescription medicines, including biologics, or when they cannot be tolerated.

It is not known if CIBINQO is safe and effective in children under 12 years of age.

You are encouraged to report adverse events related to Pfizer products by calling 1-800-438-1985 (U.S. only). If you prefer, you may contact the U.S. Food and Drug Administration (FDA) directly. Visit www.fda.gov/MedWatch or call 1-800-FDA-1088.

CIBINQO (abrocitinib) is available in 50 mg, 100 mg, and 200 mg pills.

To learn more about moderate-to-severe atopic dermatitis and CIBINQO, visit cibinqo.com.

Footnotes:

[1.] Weidinger S, Beck LA, Bieber T, Kabashima K, Irvine AD. Atopic dermatitis. Nat Rev Dis Primers. 2018;4:1. doi.org/10.1038/s41572-018-0001-z.

[2.] Silverberg JI. Public health burden and epidemiology of atopic dermatitis. Dermatol Clin. 2017;35:283-289.

PP-CIB-USA-0589

Members of the editorial and news staff of Paste BN Network were not involved in the creation of this content.