This article is sponsored by Incyte. Lisa was compensated for her time participating in the interview.
For Lisa, life with vitiligo was a roller coaster of emotions. Navigating nonsegmental vitiligo — a chronic immune condition that causes depigmentation, or white patches, on the face and body — was challenging at times. Living with a visible condition, she faced harsh reactions to her changing skin, from obvious stares to rude remarks.
Now, more than 25 years into her journey with vitiligo, Lisa reflects on the impact of vitiligo and how she’s managed the challenges of living with the skin condition, what it was like to find a treatment that worked for her, and her role as a patient advocate helping other people.
SheKnows: When did you first notice the depigmentation of vitiligo, and how has it impacted your life?
Lisa: In my twenties, I first noticed a few white spots on my hands, which eventually progressed to my arms, elbows, feet and knees. As the depigmentation spread, I grew nervous about going out in public and wearing short sleeves, even in the Texas summer heat. I tried to stay positive, but it was difficult. I had to push myself some days to get out of bed. I felt trapped.
It wasn’t until the first time that I saw someone else with vitiligo in person that my perception changed. This stranger didn’t seem to have a care in the world about his spots, which I’d noticed across the room. He seemed so comfortable, even around other people. It gave me hope that I could feel that way, too.
Now, many years later, I can look back and appreciate how far I’ve come — not only understanding my vitiligo but also playing an active role in managing the condition and using this knowledge to help others.
SheKnows: How do you manage your vitiligo?
Lisa: I follow a vitiligo management plan developed with my dermatologist where I use Opzelura® (ruxolitinib) cream 1.5%. I first noticed some repigmentation, particularly on my face, after a few months of consistent use. Now, nearly a year into treatment, I’ve seen about 80% repigmentation on my face. I know this process takes time, and I’m hoping to see further repigmentation on other affected areas of my body.
Reporter’s note: Individual results may vary. The most common side effects of Opzelura in clinical trials were application site acne, application site pruritus, nasopharyngitis (common cold), headache, urinary tract infection, application site erythema and pyrexia. Opzelura has warnings for risks that include serious infections, increased risk of death, cancer and immune system problems, increased risk of major cardiovascular events, and blood clots.
I am also careful to protect my skin with sunscreen, as the depigmented patches are more likely to burn quickly in the sun.
SheKnows: Why did you become a vitiligo advocate, and what do you do to advocate for the community?
Lisa: I became an advocate to help other people with vitiligo, and I focus on raising awareness of the condition and working to erase the stigma and misperceptions often associated with it. By sharing my story, my goal is to help others with vitiligo find hope for their own journeys.
I’m a longtime member of a vitiligo patient advocacy group called VITFriends, and I’ve been an advocate since 2018. In my community, I have done local library events, fairs, and presentations. I also use social media to share my story, raise awareness of vitiligo, and create my own videos. It’s a wonderful way to educate others and have fun.
SheKnows: What do you wish more people knew about vitiligo?
Lisa: I want people to know that vitiligo is not contagious. Also, please remember to be kind. We are often bulled or overlooked because we look different. The stigma of vitiligo must be erased, and it takes all of us to do that.
SheKnows: What advice would you give to other people with vitiligo?
Lisa: My advice is to take your time, be patient with yourself, ask questions, and work closely with your dermatologist on a management plan that works for you. Remember that even on the hard days, you are not alone and there is support. Vitiligo doesn’t have to define you or hold you back, and I’m living proof that someone with vitiligo can thrive and have an abundant life.
For more information, visit Opzelura.com/vitiligo.
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:
•have an infection, are being treated for one, or have had an infection that does not go away or keeps coming back
•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 or have had hepatitis B or C
•live, have lived in, or have traveled to certain parts of the country (such as the Ohio and Mississippi River valleys and the Southwest) where there is an increased chance for getting certain kinds of fungal infections. These infections may happen or become more severe if you use OPZELURA. Ask your healthcare provider if you do not know if you have lived in an area where these infections are common.
•think you have an infection or have symptoms of an infection such as: 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.
•have ever had any type of cancer, or are a current or past smoker
•have had a heart attack, other heart problems, or a stroke
•have had blood clots in the veins of your legs or lungs in the past
•have high cholesterol or triglycerides
•have or have had low white or red blood cell counts
•are pregnant or plan to become pregnant. It is not known if OPZELURA will harm your unborn baby. There is a pregnancy exposure registry for individuals who use OPZELURA during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. If you become exposed to OPZELURA during pregnancy, you and your healthcare provider should report exposure to Incyte Corporation at 1-855-463-3463.
•are breastfeeding or plan to breastfeed. It is not known if OPZELURA passes into your breast milk. Do not breastfeed during treatment with OPZELURA and for about 4 weeks after the last dose.
After starting OPZELURA:
•Call your healthcare provider right away if you have any symptoms of an infection. OPZELURA can make you more likely to get infections or make worse any infections that you have.
•Get emergency help right away if you have any symptoms of a heart attack or stroke while using OPZELURA, including:
•Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with OPZELURA, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, or shortness of breath or difficulty breathing.
•Tell your healthcare provider right away if you develop or have worsening of any symptoms of low blood cell counts, such as: unusual bleeding, bruising, tiredness, shortness of breath, or fever.
•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
•shortness of breath with or without chest discomfort
•breaking out in a cold sweat
•nausea or vomiting
•feeling lightheaded
•weakness in one part or on one side of your body
•slurred speech
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.
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