Repairing skin damaged by lupus

With recent attention on noninvasive, dermatologic cosmetic procedures—such as laser resurfacing of scars and collagen fillers—more people, including those with lupus, are inquiring about the availability and safety of these treatments. Skin discolored and scarred by lupus is often considered a contraindication to most cosmetic procedures. 

“People with lupus, although they may be in remission, are often left with disfiguring scars and pigmentary changes that can significantly impair their self-esteem and quality of life,” says Andrew G. Franks Jr., M.D., clinical professor of dermatology and medicine (rheumatology), and the director of the Skin Lupus and Autoimmune Connective Tissue Disease section of the Skin & Cancer Unit at New York University (NYU) Langone Medical Center. 

A distinction should be made between reparative treatments for damaged skin and purely cosmetic procedures, Franks says. “Lupus patients in remission who are left with permanent scarring deserve reparative treatment and should also be able to benefit from the emerging technological advances in lasers, fillers, and biologics, just as do individuals who have benefited for purely cosmetic reasons,” he says.

While anecdotal evidence suggests reparative treatments have helped people with lupus, there is no scientific evidence that these therapies are effective. Fillers, for example, have been used for years to correct wrinkles and other defects in the skin, but their use for scarring caused by lupus—or any autoimmune disease—has been controversial. Still, experts say their patients’ improved quality of life after treatment can’t be denied.

Healing hands

Andrew and his wife, Linda K. Franks, M.D., assistant professor of dermatology at NYU and a specialist in laser and cosmetic dermatology, have been working together for a number of years to develop sound guidelines for these reparative procedures in individuals with lupus. They both see patients at the NYU Skin & Cancer Unit.

One of their patients is Rosa Ferreira, 50, who is originally from Portugal. Lupus began to affect her skin in 2000, but her lupus story began years before.

“I was diagnosed with systemic lupus in 1986, when I was 23,” Ferreira says. “I had a lot of pain in my legs and joints. When I was told I had lupus, I remember being scared. I had never heard of it, and what I read said it was fatal.”

Until 1999, Ferreira’s main lupus symptom was joint pain. “That’s when my hair loss started,” she recalls. “It was gradual—just a bald spot at first, but it got worse and worse. Then, in 2002, the skin on my face started to get darker in color—on my cheeks, chin, and nose.”

Ferreira saw four different doctors, but her condition continued to worsen. “Finally, my rheumatologist told me to see a dermatologist in New York City,” she says. “He recommended that I see Dr. Andy Franks, who specializes in skin lupus and other autoimmune diseases. That was in 2004. He [Franks] diagnosed me with lupus profundus, which can darken the skin and cause loss of the underlying fat. I’ve been his and his wife’s patient ever since.”

Andrew Franks is one of the few physicians in the country who holds medical board certifications in dermatology, rheumatology, and internal medicine. Over the past 35 years, he has focused on immunological dermatology in his work to diagnose and treat people with skin lupus, scleroderma, Raynaud’s phenomenon, dermatomyositis, and related disorders that affect the skin in various ways.

“When Rosa came to see me for the first time, she brought in a picture of herself before she developed lupus,” Andrew Franks recalls. “I was startled to see a beautiful young woman transformed so drastically. Her form of skin lupus, known as lupus profundus, or panniculitis, causes darkening of the skin and loss of the underlying fat layers.”

Treatment talk: Lighten the skin color

Treatment success for Ferreira required dedication. “At first I would go to the center every month, for laser treatment to clear up the skin that had darkened,” she explains. “Those treatments went for two years. The skin is still dark in the same areas, but not as much as it used to be.”

Indeed, lupus skin involvement needs special attention. “The dark areas generally do not respond to the bleaching creams because the pigment is too deep. We use laser technology to correct the pigment disorder, with much better success,” Andrew Franks says. “We are currently working with laser technology on darker-color skin.” The results of these treatments have been promising, he says, but more testing is needed before he’d suggest others attempt this type of treatment.

Although reconstructive or cosmetic treatments can have side effects, Andrew Franks strives to minimize problems by making sure the underlying systemic disease, as well as the skin disease, is in remission and that there are no other complicating issues.

Treatment talk: Fill out the face

When lupus causes loss of facial volume, stimulatory filler can replace lost volume. The filler stimulates collagen formation and is especially useful for people affected by lupus profundus, says Linda Franks. Loss of facial volume is an issue even during the normal aging process for people who do not have lupus—where the loss of bone, muscle, and fat all contribute to the depletion of facial fullness. “Imagine that the face is a balloon,” says Linda Franks. “As you lose the underlying support, there is an overall deflation of volume which leads to wrinkling and downward descent of the skin.” 

After the course of laser treatment for Ferreira’s skin pigmentation, Linda Franks began treating Ferreira with a collagen stimulator called Sculptra® to try to replace facial volume Ferreira had lost from the lupus profundus. “I had started losing the fat in my cheeks, and that was the hardest thing,” Ferreira says. “People didn’t know it was me! I lost my self-esteem, my confidence. For a while I couldn’t look in the mirror. But I had a lot of family support. It’s a little better now that I’ve been using fillers.”

In Ferreira’s case, this deflation was severely accentuated by the destruction of her facial fat by the lupus. “Using a stimulatory filler will help to replace some lost support and return volume and convex, round surfaces to the cheeks, chin, and temples,” Linda Franks says. For people with lupus, this is first performed on a test site using small quantities of filler.

According to both doctors, individuals with lupus take longer to respond to the treatments. In addition, depending on the person’s medications, the collagen stimulatory response may be blunted. Non-stimulatory fillers containing hyaluronic acid may also temporarily improve scarring and volume loss. Even these fillers will build some collagen, and with improved hydration of the skin and dermal support, the overlying skin gains better metabolism and function.

The Food and Drug Administration has approved two types of stimulatory filler: Sculptra and Sculptra Aesthetic® which use poly-L-lactic acid, and Radiesse®, which uses calcium hydroxylapatite.

But cost can be a barrier to these treatments. Typically, health insurance policies do not cover cosmetic procedures. “What we try to do with coverage is to use ‘repair’ medical procedure codes when we submit the insurance paperwork, rather than ‘cosmetic’ codes,” Andrew Franks explains. The Franks also have applied for a grant to perform these procedures and hope to treat patients by insurance coverage in the future.

Are you ready?

Know the potential risks and benefits of dermatologic procedures—and how they could affect your lupus—before you have them, Andrew Franks advises. “Certainly, we are cautious with these treatments because any technique that manipulates the skin could reactivate the lupus,” he says. “There are a number of criteria we establish before considering people with lupus for these types of skin treatments.”

Among the requirements: Their lupus must be in full remission, and their rheumatologist and regular dermatologist (if they have one) must agree with the planned treatment. They also check to ensure that any medications the patient is taking will not significantly delay healing.

But even the most thorough planning cannot totally eliminate the possibility of side effects. Bruising, for example, is the most common side effect from filler injections and usually occurs around the eyes, mouth, and chin. And tenderness at the injection sites can occur and last a few days.

A most beautiful spirit

“I know a lot of people with lupus, but I’ve never seen anyone who looks like me, whose face and skin are like mine,” says Ferreira.

She tells the story of the time when her son was in the sixth grade and there was an event at school for parents. “He told me, ‘It’s OK, you don’t have to go,’” she recalls. “He’s the kind of boy who doesn’t talk about his feelings, and he would always say to me, ‘I love you, you’re beautiful,’ but I know that time he didn’t want me to go because of the way I looked.”

But that doesn’t mean Ferreira feels sorry for herself. “I know so many people who are much worse off than me,” she says. “Just recently I learned of a young girl, 23 or 24, who died of lupus. I know her parents—they’re from the same tiny town in Portugal where I grew up,” she says. 

So her main advice to others with scarring from lupus is to keep a positive outlook. “If you can do some things to make your skin look better, then go for it, but stay optimistic, and try to be happy the way you are,” Ferreira says. “I try to stay focused on those things to be thankful for, like my son and the rest of my family. Looking like this hurt my self-esteem, but I am more used to the way my face looks now and I am feeling better. Going for the treatments gives me hope.”

More than skin

According to Andrew G. Franks Jr., M.D., who is on the Lupus Foundation of America’s Medical-Scientific Advisory Council, one of the first questions asked by a person newly diagnosed with skin lupus is, “What are the chances that I will develop systemic lupus?”

To answer this question, Franks says, lupus specialists generally assess five factors:

1. Does the person have lupus skin lesions below the neck?
2. Does he or she have the types of rashes that are commonly found concurrently with lupus, e.g., those that appear with vasculitis?
3. Does the person have generalized joint pain?
4. Are there high levels of antinuclear antibodies (ANA) or a positive double-stranded DNA (dsDNA) antibody test?
5. Is there evidence of kidney involvement, such as protein or blood in the urine?

“If one or more of these ‘markers of transition’ are found,” he says, “then the likelihood of systemic lupus increases, and the person is evaluated more frequently for evidence of systemic involvement.”