What living with vitiligo is really like

Spokespeople featured were compensated for their participation.

Imagine looking in the mirror one day, and your skin just looks… different. Whether it’s on your hands, forehead, or neck, you spot a patch that’s noticeably lighter than your usual skin tone.

It’s unsettling, to say the least — and that’s reality for the 1.9 to 2.8 million people in the United States affected by vitiligo¹, a chronic condition that leads to depigmentation of the skin, resulting in white patches on the face and body. Vitiligo is not contagious and can occur in people of any age, ethnicity, or gender.²

Although vitiligo manifests on the skin, it’s not a cosmetic condition. “It results from the destruction of melanocytes, which are the cells in our body that produce pigment. It’s an autoimmune disease with a clear basis in science,” said Dr. Brittany Craiglow, a board-certified dermatologist with experience treating vitiligo. “Vitiligo can have a profound impact on people’s lives. When you have a visible difference, particularly on the hands and face, all of a sudden, everybody knows.”

Neil G. first began to suspect he might have the condition around four years ago. “I started to notice some white patches around my mouth and also on my forehead,” he said. Neil went to see his dermatologist, who ordered blood tests and conducted an in-depth exam using a Wood’s lamp (a diagnostic tool using ultraviolet light). “It was even more pervasive than what met the naked eye,” he said. Neil was diagnosed with nonsegmental vitiligo, the most common type of vitiligo, where depigmented patches appear on both sides of the body.¹

The pigment loss significantly impacted Neil’s perception of himself, particularly because of his job in marketing and advertising within the entertainment industry. “Though I’m behind the camera, I’m in the public eye a lot at meetings with high-profile people, going to events, even being on the red carpet,” he said. “It affected my self-confidence.”

Neil began seeing a dermatologist with vitiligo expertise to better manage his condition, and she suggested he try OPZELURA® (ruxolitinib) cream 1.5%, a prescription cream for the topical treatment of nonsegmental vitiligo in adults and children ages 12 and older. Dr. Craiglow (who is not a member of Neil’s care team) explained that Opzelura is believed to work by targeting a signal in the immune system known as the JAK-STAT pathway. “Opzelura interrupts the signaling of an inflammatory cycle that destroys melanocytes. This allows for a more favorable environment for melanocytes to regenerate and produce pigment over time,” she said.

As prescribed by his dermatologist, Neil applied a thin layer of Opzelura over the affected areas of his skin twice a day. Over time, Neil began to see his white patches start to repigment. “Things started to improve slowly, over the course of months,” he said. “I would say that I’ve seen significant repigmentation.” While individual experiences with Opzelura may vary, Neil was pleased with his personal response to the treatment.

Incyte, the makers of Opzelura, conducted two six-month clinical studies and found that at week 24, approximately 30 percent of participants using Opzelura saw a ≥75 percent improvement in a score called the Facial Vitiligo Area Scoring Index (F-VASI75) that measures the extent of skin depigmentation with vitiligo. At week 52, about 50 percent of patients who applied Opzelura from Day 1 saw a ≥75 percent improvement in F-VASI75. To achieve a satisfactory response with Opzelura, some patients may have to continue treatment for more than six months.

Opzelura can lower your ability to fight infections including TB or hepatitis B or C. Serious lung infections, skin cancer, blood clots, and low blood cell counts occurred with Opzelura. In people taking JAK inhibitors, serious infections, increased risk of death, lymphoma, other cancers, and major cardiovascular events have occurred. The most common side effect was application site acne. See additional Important Safety Information below.

Dr. Craiglow said when using Opzelura, first, patients might see small, pigmented dots appear in the depigmented areas — like “little pepper flakes within a sea of salt” — as the hair follicles regain their pigment. She said that watching her patients repigment gradually over time can be extremely rewarding. “Having a relationship with my patients along the way to see the progress is really important and impactful,” she said.

Neil said finding a treatment that worked for him really impacted the way he felt about his vitiligo. “It certainly just changes your mindset,” he said. “When I started my treatment plan and things started to improve slowly over the course of months, I felt that there was help. I was going in the right direction.”

As a healthcare provider, Dr. Craiglow also said she felt pleased to have a treatment option like Opzelura to offer her patients. “For so many patients, hearing there is an FDA-approved treatment for their disease is not only exciting but it also can validate their experience,” she said.

Dr. Craiglow recommended that anyone with vitiligo should work closely with a dermatologist to create an individualized management plan that fits their lifestyle. “Part of being a physician is to treat the whole person,” she said, and everyone has a different relationship with and perspective on their vitiligo. Dr. Craiglow also said it’s important to remember that it can take several months before patients begin to see repigmentation while using Opzelura. “This is where we really have to be the cheerleader” for patients, she said. She often finds herself reminding patients with vitiligo that the treatment takes time, so you have to stick with it.

Neil is still using Opzelura to manage his vitiligo, and he said he feels optimistic about managing his condition and hopeful that other people with the condition will have similar success. “Know that there is hope and there is treatment,” he said. “Vitiligo doesn’t have to define who you are or how you present yourself to the world.”

For those interested in treatment, see the Indication and Important Safety Information below, ask your dermatologist about Opzelura and learn more at Opzelura.com.

INDICATION AND USAGE

OPZELURA is a prescription medicine used on the skin (topical) for the treatment of a type of vitiligo called nonsegmental vitiligo in adults and children 12 years of age and older.

The use of OPZELURA along with therapeutic biologics, other JAK inhibitors, or strong immunosuppressants such as azathioprine or cyclosporine is not recommended.

It is not known if OPZELURA is safe and effective in children less than 12 years of age with nonsegmental vitiligo.

IMPORTANT SAFETY INFORMATION

OPZELURA is for use on the skin only. Do not use OPZELURA in your eyes, mouth, or vagina.

OPZELURA may cause serious side effects, including:

Serious Infections: OPZELURA contains ruxolitinib. Ruxolitinib belongs to a class of medicines called Janus kinase (JAK) inhibitors. JAK inhibitors are medicines that affect your immune system. JAK inhibitors can lower the ability of your immune system to fight infections. Some people have had serious infections while taking JAK inhibitors by mouth, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have been hospitalized or died from these infections. Some people have had serious infections of their lungs while taking OPZELURA. Your healthcare provider should watch you closely for signs and symptoms of TB during treatment with OPZELURA.

OPZELURA should not be used in people with an active, serious infection, including localized infections. You should not start using OPZELURA if you have any kind of infection unless your healthcare provider tells you it is okay. You may be at a higher risk of developing shingles (herpes zoster) while using OPZELURA.

Increased risk of death due to any reason (all causes): Increased risk of death has happened in people 50 years of age and older who have at least 1 heart disease (cardiovascular) risk factor and are taking a medicine in the class of medicines called JAK inhibitors by mouth.

Cancer and immune system problems: OPZELURA may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers have happened in people taking a medicine in the class of medicines called JAK inhibitors by mouth. People taking JAK inhibitors by mouth have a higher risk of certain cancers including lymphoma and lung cancer, especially if they are a current or past smoker. Some people have had skin cancers while using OPZELURA. Your healthcare provider will regularly check your skin during your treatment with OPZELURA. Limit the amount of time you spend in the sunlight. Wear protective clothing when you are in the sun and use a broad-spectrum sunscreen.

Increased risk of major cardiovascular events: Increased risk of major cardiovascular events such as heart attack, stroke, or death have happened in people 50 years of age and older who have at least 1 heart disease (cardiovascular) risk factor and taking a medicine in the class of medicines called JAK inhibitors by mouth, especially in current or past smokers.

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 OPZELURA. This may be life-threatening. Blood clots in the vein of the legs (deep vein thrombosis, DVT) and lungs (pulmonary embolism, PE) have happened more often in people who are 50 years of age and older and with at least 1 heart disease (cardiovascular) risk factor taking a medicine in the class of medicines called JAK inhibitors by mouth.

Low blood cell counts: OPZELURA may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia), and low white blood cell counts (neutropenia). If needed, your healthcare provider will do a blood test to check your blood cell counts during your treatment with OPZELURA and may stop your treatment if signs or symptoms of low blood cell counts happen.

Cholesterol increases: Cholesterol increase has happened in people when ruxolitinib is taken by mouth. Tell your healthcare provider if you have high cholesterol or triglycerides.

Before starting OPZELURA, tell your healthcare provider if you:

After starting OPZELURA:

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

The most common side effects of OPZELURA in people treated for nonsegmental vitiligo include: acne at the application site, itching at the application site, common cold (nasopharyngitis), headache, urinary tract infection, redness at the application site, and fever.

These are not all of the possible side effects of OPZELURA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Incyte Corporation at 1-855-463-3463.

Please see the Full Prescribing Information, including Boxed Warning, and Medication Guide for OPZELURA.

OPZELURA, Incyte, and the Incyte logo are registered trademarks of Incyte.

© 2024, Incyte. MAT-OPZ-01958 03/24

¹ Gandhi K, et al. Prevalence of vitiligo among adults in the United States. JAMA Dermatol. 2022;158(1):43-50.
² Harvard Health Blog. More than skin deep. Accessed January 12, 2024.