For most people with mild forms of eczema, a daily skin care routine is all they need to keep their condition under control. But that’s not always the case for adults and children with moderate to severe atopic dermatitis (AD)-the most common, difficult-to-treat form of eczema that counts asthma, allergies and depression among its correlated health conditions.
Those with AD often find themselves on a never-ending quest to identify the allergens, weather patterns and other triggers that serve as clues behind their mysterious flare-ups. They jump from treatment to treatment, sometimes achieving temporary relief from the redness and itch. But the medication eventually stops working, the flare-ups return with a vengeance, and they’re back to square one feeling defeated and unsure of what to do next.
“Many patients can achieve disease control with good skin care habits and topical treatments. However, these treatments often have inadequate efficacy in patients with moderate to severe AD,” said Mark Boguniewicz, MD, a pediatric allergist and immunologist at National Jewish Health in Denver.
“Until recently, the only FDA-approved treatments were systemic corticosteroids. But these are not recommended because of short- and long-term side effects and patients often rebounding after discontinuing treatments. The lack of safe and effective systemic treatments means that most moderate-to-severe AD patients’ disease is often not well controlled.”
A steering committee (SC) co-chaired by Boguniewicz and Mark Lebwohl, MD, professor and system chair at Mt. Sinai in New York City, and consisting of leading AD experts, including dermatologists, allergists and NEA President and CEO Julie Block, embarked on a quest to address these unmet patient needs.
From July 2016 to January 2017, the SC developed recommendations to help medical providers achieve better results in treating patients with moderate to severe AD given the new options now available. The recommendations were published in the November-December 2017 issue of Journal of Allergy and Clinical Immunology: In Practice.
“Researchers are working harder than ever to identify the underlying causes of atopic dermatitis and develop treatments that get to the core of the issue instead of simply masking disease symptoms. NEA is committed to educating the medical community about new treatment options coming onstream, so doctors can work in tandem with patients to achieve better health outcomes,” Block says.
Your friends at the National Eczema Association think you have what it takes to master this quest. The time has come to TAKE CHARGE OF YOUR ECZEMA! We’ll show you how to do it in three easy steps.
Step 1: Understand the severity of your atopic dermatitis.
Whether you are newly diagnosed, suspect you have AD or have been living with the disease for years, the first step to taking charge is having a complete understanding of what atopic dermatitis is and how it impacts your day-to-day life.
Knowledge is power, so if you haven’t already, peruse the National Eczema Association website at nationaleczema.org. Here, you can learn everything there is to know about AD and other forms of eczema such as contact dermatitis, seborrheic dermatitis, dyshidrotic eczema and nummular dermatitis.
“These diseases may require different treatments, and determining which disease is crucial. In addition, a single patient can manifest multiple types of eczema,” said Mark Boguniewicz, MD.
Because eczema affects people in myriad ways, it can be tricky to diagnose. The SC recommends medical providers conduct thorough clinical assessments on patients. They should inspect the pattern and distribution of skin lesions, while taking into consideration how lesions appear differently on various skin tones.
For instance, some people with AD experience lichenification (thick or leathery skin), others see dyspigmentation (redness, darkening or other color changes), and nearly all of them experience varying levels of pain, sleeplessness and pruritis, the medical term for itch.
- How much of the body surface area (BSA) is covered with disease? The most consistent method across age and race is to equate the adult palm without fingers as 0.5% total BSA. People with moderate to severe AD have a BSA of 10% or higher. That’s about 20 palms’ worth of skin.
- Where on the body does the disease appear? Whether AD is on visible areas of the body, such as the face or neck, or areas necessary for human function, such as the palms of the hands, soles of the feet or genitals, can determine the level of severity.
- How does AD impact the person’s quality of life (QOL)? Medical providers need to factor in whether AD negatively affects a patient’s sleep quality, emotional and mental health, and ability to perform every day activities.
How do I know if I have moderate to severe atopic dermatitis?
- Does the disease cover 10% or more of your body?
- Does the disease appear on visible areas of your body or those important for function such as your face, genitals, hands or feet?
- Does the disease significantly impair your quality of life, including sleep quality and mental health?
If you answered yes to one or more of these questions, then it’s time to have a heart-to-heart with your medical provider. Proceed to Step 2.
Step 2: Start a shared decision-making plan with your doctor.
It’s important to remember that the state of your disease does not fall solely on the shoulders of your medical provider. This is your health and well-being on the line, and you can take ownership of that. The steering committee firmly believes that treatment of AD should be based on a concept called “shared decision-making” (SDM), a health care model in which a doctor and patient work together to set and achieve health goals and make treatment decisions.
“Patients should be appropriately informed about treatment goals and expectations, limitations and the strategy planned to reach these goals,” said Lebwohl. “Their doctors should give them a realistic overview of the risks and benefits of a given therapy, taking into consideration comorbidities and other health conditions that may affect treatment choice.”
Online medical resource Medscape released research in 2016 that featured data from more than 19,200 doctors in 26 specialties. Included in the report was the average amount of time doctors spend with each patient: 13-16 minutes. Learn how to get the most out of those 13-16 minutes by planning ahead.
Here is a sample list of topics to bring with you to your next medical appointment. Start with your most pressing questions in case you run out of time.
- What are my health goals and expectations (clearer skin, less itching, better sleep)?
- What strategy do we have in place to reach these goals?
- Is my current medication succeeding or failing?
- What are my other treatment options?
- What are the risks and benefits of these treatments?
- What about socioeconomic factors (affordability, insurance coverage, reimbursement)?
“Educational resources for patients and providers, including those provided by the National Eczema Association, are an important element of shared decision-making,” Lebwohl said.
NEA is continuously developing web-based tools to make it easier for patients and caregivers to organize and prepare for health care appointments. Later this year, we will launch our SDM Resource Center. This will be an online portal that gives eczema patients access to a health dashboard to monitor eczema that includes checklists, decision aids and action plans to achieve better health outcomes.
How do I know if my eczema treatment is failing?
- Do you see reoccurrence of flares regardless of severity, disease duration or short-term treatment with topical corticosteroids?
- Is there no improvement in your sleep or quality of life and your AD continues to make everyday tasks challenging?
- Are you experiencing unacceptable side effects?
If you answered yes to one or more of these questions, then it’s time to explore different treatment options. Proceed to Step 3.
Step 3: Work with your doctor to find the right treatment plan for you.
If the current treatment you’re on doesn’t effectively control your symptoms of AD or improve your QOL, perhaps you are not treating to the level of severity of your disease. Another possibility is that you may have been treating the wrong disease all along. “Those of whom treatment resistance is suspected should be completely reassessed to ensure that the diagnosis of AD is correct,” Boguniewicz said.
If AD is confirmed, “Patients should be educated on all available therapies, including oral agents, injectables and topical agents, before choosing a treatment,” Lebwohl said. “Providers should inform patients of all their therapy options before offering reasons for recommending a certain treatment so that patients can be active participants in their own health goals.”
The SC recommends doctors prescribe topical corticosteroids (TCS) daily for up to four weeks for active treatment and two to three times weekly for preventative treatment. Studies have shown that acute treatment can reduce symptoms in as few as 3 days, with continuing improvement over three weeks. The SC acknowledges that daily use on different lesions may be necessary to maintain control for those with severe disease.
Phototherapy is recommended by the American Academy of Dermatology (AAD) as a second-line treatment after topical therapy. Several forms of light therapy have been shown to benefit patients with moderate to severe AD, and it is low risk. However, the availability of this type of therapy in clinics, and the time required for sufficient therapy, may hinder its use.
New scientific research has uncovered the far-reaching nature of AD in the human body, with evidence that inflammation is not limited to the skin but also involves other organs. As a result, drugs that can transmit their effects throughout the body (systemic treatments) can be used when patients fail to respond to topical medications. However, if drugs have widespread effects in the body, this can also mean that they cause more side effects.
Medications known as immunosuppressants (e.g. cyclosporine, methotrexate, azathioprine, mycophenolate mofetil, omalizumab, and allergen-specific immunotherapy) help to control or slow down the development of inflammation involved in AD and may control some of the symptoms.
These medications are often prescribed by physicians “off-label” because they are not approved by the FDA for the treatment of AD, and the side effects associated with their use are concerning. Of these agents, the SC considers cyclosporine the most effective, although significant safety concerns often limit the length of time treatment can be tolerated and extensive monitoring is strongly recommended.
Another option is systemic steroids. The most common systemic steroids for treating AD are prednisone and prednisolone, which are available as tablets or oral solution, and triamcinolone acetonide, which is available as an intramuscular injection.
However, the SC does not recommend treating patients with systemic steroids in most situations “because they are poorly tolerated and often exacerbate the disease when treatment is discontinued,” said Boguniewicz said. “We recommend systemic steroids be used with caution only for short courses in patients with severe exacerbations while maximizing topical therapy.”
Then there’s the biologic Dupixent (dupilumab), which was FDA approved in 2017 for treating moderate to severe AD. Biologics are genetically engineered medications that contain proteins derived from living tissues or cells cultured in a laboratory to treat diseases at the immune system level. By stopping the immune system from overreacting, dupilumab lowers inflammation and other symptoms of AD.
“Dupilumab has shown strong efficacy and safety for treatment of moderate to severe AD in adults,” Lebwohl said. “Considering the safety profiles of conventional systemic therapies, which are not FDA-approved for AD treatment, it is recommended that dupilumab be used as a first-line systemic treatment in adults with moderate to severe AD that is uncontrolled by topicals.”
“For over a decade, we had no new treatment options. Now, we have two safe and effective treatments available to patients, and I am excited to report that more than 65 new therapies are making their way through the treatment development pipeline,” Block said.
“Researchers are engaging patients in every facet of treatment development. Finally, the true impact on patients’ quality of life is receiving the light and attention it deserves. There has never been a greater time to take charge of your eczema!”