The Expert Series: Skin Lupus - Beyond the Butterfly Rash
66% of those with lupus will develop some form of skin disease.
In this episode of The Expert Series, Victoria Werth, MD will teach you about how lupus can affect the skin as she describes skin lupus subtypes and how to manage living with lupus.
Welcome to The Expert Series, brought to you by the Lupus Foundation of America. Our speaker today is Dr. Victoria Werth. She's a dermatologist at Pennsylvania medicine in Philadelphia, Pennsylvania, with expertise treating lupus patients with skin disorders. Today, Dr. Werth will be speaking about skin lupus, beyond the butterfly rash. I would like to turn it over to Dr. Werth. And thank her for joining us.
Dr. Werth 0:27
It's good to be with you today. We're going to talk about skin lupus. And this is a variety of different conditions that happen in patients with lupus. Some of them are really specific to lupus, and this includes subtypes such as discoid lupus, which can lead to sometimes scarring and early treatment can hopefully prevent more activity that leads to scarring.
Then we have subacute cutaneous lupus, which sometimes can be related to medications and tends not to scar, but it's certainly related to sun exposure much of the time.
And then acute cutaneous lupus, which includes having a butterfly rash that comes out often with sun exposure, and can look like either pink or red on the malar areas of the cheeks. And very often this again triggered by sun exposure and can be seen in people who also have systemic lupus.
So we're going to talk about how to differentiate between cutaneous lupus and systemic lupus, and patients that can have skin lupus and not have systemic features. There may be systemic features, but not enough to be called systemic lupus. And then some patients with skin findings can also meet criteria for systemic lupus.
Very often the skin findings can be very similar whether or not you have systemic disease. And the approaches to treatment can often be quite similar. Turns out that as we discussed before, the subtype of lupus that you can see, for instance, discoid lupus will determine how frequently people might have underlying systemic disease. So somebody has just localized disease that's above the neck with discoid lupus, if there's a less of a chance of going on to systemic lupus, you still need to have laboratories checked on a regular basis to make sure that other internal organs are not involved, but it's less likely when it's just a localized discoid lupus.
Sometimes generalized discoid lupus occurs above with lesions above and below the neck. And when that happens probably about 20% of the time, people can meet criteria for systemic lupus. With subacute, cutaneous lupus, there is probably about 50% chance of having systemic lupus but very often it's more mild. And the important thing is still to be screened for other underlying systemic disease but very often it's more mild when you have subacute, cutaneous lupus.
And then with acute lupus, which is again the butterfly rash or could be more on extensor surfaces of the arms, photo-exposed, you know, areas that see the sun, it's more likely that people will meet criteria for systemic lupus. But really the bottom line is that when you have skin lupus still need to be really screened to make sure that things don't progress to more internal involvement.
And again to emphasize that the skin findings that can be seen with or without SLE are really quite similar. So people with cutaneous lupus and systemic lupus can have very similar features. There are some features in the skin that are not specific to lupus but can be associated with lupus and that can include sometimes hair loss, that can be different types of hair loss, then also vasculitis, sometimes people have hives. So there's a variety of other lesions that can be seen that again, are at increased frequency and can be associated with especially systemic lupus but also part of cutaneous lupus.
One thing we want to talk about also is how to manage lupus, especially when it's cold and dry winter months. And basically there in cold weather skin can be dry and itchy. Use some moisturizers can be very helpful. And in order to deal with the dryness and itchiness and we often advise use of a super fatty soap like not a drying soap and this can be very, very helpful for people so that they're not drying out their skin. People who know that their hands turn colors in the cold like white or with Reynauds often have to protect their fingers and toes and wear gloves and socks and really be careful about exposure. And these can help avoid problems with Reynauds.
In warmer months the sun can trigger a rash as we've talked about. And in that situation, it's really helpful to avoid the sun if possible, particularly during peak hours. Probably it's not a good idea to go and sit on a beach and wearing sun clothing that can protect the skin from the sun is helpful; wearing hats, some of which have SPF protection. So again can be extremely helpful to prevent exposure to the face and scalp of the sun. And then sunscreens often with an SPF of 60 or higher is also a very good idea.
So the social considerations we talk about sometimes, when you think about getting tattoos or body piercings, these are irritating to the skin. And sometimes when people even just scratch their skin, they can induce skin lesions of lupus. And so this type of body piercing or tattooing can actually also be associated with increasing lesions of looseness in the skin. So you have to be pretty careful about doing that to your skin.
And then the last thing is, again, avoiding exposure to the sun. If you know the sun makes your skin flare, you really want to be even more aware of that. And be very, very careful. Also advise people to be careful about herbal supplements and even weight loss products, powders and things like that. They can trigger sometimes--some of them not all of them, but some of them--can trigger the immune system and you want to be really, really careful to discuss use of these kinds of preparations again, herbal supplements or other products with your doctor before deciding to use them.
And then we have other treatments for lupus, some of them are more topical like creams or ointments that can be helpful. But for people who have more severe disease, there really are a range of systemic options that are available--pills or infusions that can be very helpful to try to prevent and treat the ongoing activity in the skin. There are also a number of trials that are ongoing to try to improve on our therapies because there are people who right now who have a hard time controlling their skin. Thank you very much for joining us.
Thank you Dr. Werth for joining us today. We appreciate all the great information that you shared about skin lupus. For those listening in, we invite you to check out additional segments of The Expert Series at lupus.org. If you'd like to learn more about living well with lupus, you can find additional resources on the National Resource Center on Lupus or you can call one of our health educators at 1-800-558-0121. Or if you'd like to connect with others who are impacted by lupus, check out our online community LupusConnect where you can talk with others find emotional support and discuss practical insights for coping with the daily challenges of lupus. Thank you and have a wonderful day.
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- Episode 1: Managing and Preventing Flares
- Episode 2: Financing Your Medical Care
- Episode 3: Tips for Managing Medication Side Effects
- Episode 4: Diet and Lupus: Separating Fact and Fiction
- Episode 5: Lupus and Brain Fog
- Episode 6: Lupus and Men
- Episode 7: Complementary and Alternative Medicine
- Episode 8: Clinical Trials and Lupus
- Episode 9: Lupus 101
- Episode 10: Exercise and Lupus
- Episode 11: Lupus Lab Work and Blood Tests
- Episode 1: Skin Lupus - Beyond the Butterfly Rash
- Episode 2: Becoming a Self-Advocate
- Episode 3: Lupus and Heart Health
- Episode 4: Lupus and the Kidneys
- Episode 5: Preparing for a Doctor's Appointment
- Episode 6: Childhood Lupus and Mental Health
- Episode 7: Vaccine Safety and Lupus
- Episode 8: 5 Common Questions About Diagnosing Lupus
- Episode 9: Planning for Pregnancy with Lupus
- Episode 10: Lupus and Eye Health
- Episode 1: Lupus Foundation of America Health Educators and Resources
- Episode 2: Fatty Acids and Lupus
- Episode 3: Mental Health and Wellness During a Time of Uncertainty
- Episode 4: Telehealth and Lupus
- Episode 5: Reproductive Health and Lupus
- Episode 6: The Impact of Racial Trauma on Mental Health
- Episode 7: Kidney Health and Lupus
- Episode 8: The Importance of Support
- Episode 9: Trust and Participation in Research
- Episode 10: Advice from the Community
- Episode 1: Lupus and Physical Activity
- Episode 2: Top Questions about Skin and Hair
- Episode 3: Managing Your Journey with Lupus Nephritis
- Episode 4: Improving Health Visits for People with Lupus
- Episode 5: Could It Be Lupus?
- Episode 6: Men’s Health and Special Considerations with Lupus
- Episode 7: Making it Work with Lupus
- Episode 8: 2021 Lupus Treatment Research Updates
- Episode 9: Lupus Myths and Realities (podcast in Spanish)
- Episode 10: Diet, Nutrition, and Kidney Health
- Episode 11: Caring for Caregivers
- Episode 12: Winter Wellness
- Episode 1: Medication Management
- Episode 2: The heart and lupus
- Episode 3: Recursos Financieros Para Personas Hispanas/Latinas con Lupus (Financial Resources for Hispanics/Latinos with lupus)
- Episode 4: Lupus and Antiphospholipid Syndrome (APS)
- Episode 5: Self-care & self-management for people with lupus
- Episode 6: Fertility and reproductive health
- Episode 7: Participating in Clinical Trials
- Episode 8: Lupus and the Eyes
- Episode 9: Respuestas de nuestra educadora de la salud
- Episode 10: Health Disparities and Social Determinants of Health