Laurie Engel wakes suddenly in the middle of the night, jolted from the same recurring dream. Her hands scan her body, feeling for lesions. Relief soon replaces anxiety; it was just a dream.
Engel’s skin has been clear of psoriasis for nearly a decade, but that doesn’t keep her subconscious from conjuring the all-too-familiar sensation that her entire body is covered — and the feelings of frustration and anxiety that accompany it. “You still have those moments of fear,” says Engel, a retired Pepsi sales manager who lives near Tampa, Florida. “When you’ve been clear, you get very fearful that it’s going to come back.”
Now 62, Engel has been dealing with psoriasis for the better part of five decades. She was a teenager living in suburban Philadelphia when a doctor first diagnosed her with psoriasis of the scalp and gave her shampoo to treat the itching. “When I was 16, I really didn’t understand the impact of it,” Engel says. “It wasn’t sinking in that this was going to be my little partner for life.”
Before long, psoriasis began appearing elsewhere on Engel’s skin, ultimately covering nearly 90 percent of her body in small, round spots reminiscent of mosquito bites. From awkward explanations to early boyfriends and college roommates, to self-conscious beach vacations and social gatherings, the disease has been Engel’s lifelong companion ever since. But while psoriasis has been a constant for Engel over the last several decades, treatment for the disease has changed radically during that time.
People diagnosed with psoriasis in the mid-20th century often were fortunate to get a prompt, correct diagnosis — and once they did, treatments were strictly topical and only marginally effective. Today, the treatment toolkit has grown to include topical, oral, injectable and intravenous (IV) medications, which for many patients can yield near-total relief from psoriasis symptoms. “[Innovations in treatment have] provided patients a lot more options in terms of controlling their disease,” says Wynnis Tom, M.D., a dermatologist at Rady Children’s Hospital-San Diego. “It’s certainly helped to treat a lot more people, especially those with the severe types of psoriasis.”
For longtime psoriasis patients like Engel, each step forward in treatment has brought them one step closer to clearer skin and improved quality of life. While these medical advancements can’t erase years of physical discomfort and emotional strain, they have provided a sense of control over the disease that, in decades past, was largely unattainable. “I am so thankful for the research that has been done to provide such better options for treatment,” Engel says. “I feel strong and more in control of my psoriasis today than when I was in my 20s and 30s.”
Limited options, little relief
The noxious smell of fresh asphalt causes most drivers to roll up the windows. But for Engel, random encounters with road construction are more than merely unpleasant; they transport her back through the decades, to a time when soaking in a tar-infused bath for 20 minutes was the only way she could find relief from her psoriasis. “That was horrible,” she says. “It’s exactly what it sounds like. You get in a bathtub that is brown, and it smells like roadwork.”
Coal tar is still used in shampoos, lotions and soaks to reduce the itching, scaling and inflammation of psoriasis. For most people, it offers only mild relief, Tom says, and it’s typically only used in conjunction with other treatments. “It can be soothing for some, but it’s got a significant smell,” she says. “Usually by itself, it’s not that effective.”
In the early ’70s, when Engel was newly diagnosed, stinky tar baths and sticky tar shampoos made the short list of treatment options, along with topical steroids. “That’s what they had back then,” Engel says. “The bath to me was so humiliating.”
Around the same time, on the other side of the country, Pete Miller was also turning to tar to treat his psoriasis, and also with only minimal success. Miller, who was diagnosed in the early ’60s as a high school freshman, first heard from a general practitioner that his psoriasis was a case of ringworm. As a painfully shy 14-year-old, he withdrew from beloved sports like basketball because the shorts showed too much skin, and he dreaded mandatory shower time during his daily physical education classes. “You have this stuff all over you, and you’re self-conscious anyway,” says Miller, a retired elementary school principal and National Psoriasis Foundation board member in Portland, Oregon. “I can’t even tell you. I still wear the [emotional] scars at 70 years old.”
As with Engel, tar-based shampoos, baths and ointments were Miller’s go-to treatments, but they offered little relief. “As I remember, the tar took the flaking away, but it didn’t do much for the redness,” Miller says. “Sometimes the redness was almost worse, but it didn’t itch as much.”
Both Miller and Engel spent much of their early adulthood slathering on creams and ointments, resenting the flakes that followed them everywhere and stressing over encounters with the opposite sex. Miller struggled with dating and intimacy, while one of Engel’s boyfriends stopped calling after she explained that the patches on her knees were psoriasis. But in the ’80s, both saw a light at the end of the tunnel: a new psoriasis treatment using ultraviolet (UV) rays.
Seeing the light
Miller was fresh out of college and working as a teacher when he first visited Palm Springs, California, and discovered the remarkable effect of intense sunlight on his psoriasis. “It’s just like a miracle what ultraviolet light does to your skin,” he says.
Miller began going to the desert oasis every chance he had during school breaks. “Everyone else would go golfing and I would stay and sunbathe. I wouldn’t want to use sunscreen because I wanted the full effect.”
In his 30s, Miller found a dermatologist who offered a way to bring Palm Springs — or at least its solar benefits — to him. The treatment, called PUVA, coupled light booth exposure to ultraviolet A (UVA) rays with psoralen, a pill that causes the skin to become more sensitive to light. When the treatment, still used today, debuted in the ’80s, it was groundbreaking. “It was the best treatment at that time for psoriasis,” Miller says. “It not only took the psoriasis away, it also gave me a nice suntan.”
Engel also received PUVA treatments through much of the ’80s and ’90s, with similar effect. “The PUVA treatments were probably the biggest breakthrough for me,” she says.
Instead of dabbing creams from head to toe, the light treated Engel’s entire body at once and could keep the psoriasis at bay for months at a time. However, relief came at a price: Because UVA rays damage the skin, Engel is permanently covered in freckles, and Miller has had a half-dozen basal cell carcinomas — a type of skin cancer — removed from his face and neck. Miller also had cataracts at an early age, which he suspects may be related to his heavy reliance on UV rays. Both Miller and Engel ultimately had to stop PUVA treatments when their cumulative exposure became too great.
For some people with psoriasis, phototherapy remains a viable option, especially the newer treatments that provide brief exposure to less-damaging ultraviolet B rays. “We pick very particular types of light now,” says Tom, the San Diego dermatologist. “We don’t give up on it as a treatment, but obviously we want to avoid skin cancers down the road.”
These improved phototherapies are part of a steady increase in the number of psoriasis treatment options that extended through the end of the 20th century, from systemic medications to topicals containing synthetic vitamin D. In the early aughts, the most revolutionary medications yet appeared on the market, forever altering the psoriasis landscape and the lives of people with psoriatic disease.
Biologics and beyond
It took Engel nearly a decade to give in to her dermatologist’s recommendations to try biologics, drugs that target the immune system cells and proteins responsible for the inflammation associated with psoriasis, administered with an injection or IV infusion. “I was just so fearful of suppressing my immune system,” she says. “I was afraid I was going to get sick.”
By 2008, when she could no longer do PUVA treatments, and the topical she was using stopped working, she finally decided to try a biologic. “I’ve never looked back,” she says.
Her skin cleared within eight months, and it’s stayed that way ever since, even after she had to switch to a second biologic in 2011. Engel’s success on biologics has made her more confident in her appearance, whether wearing short sleeves or baring her bikini-clad body on cruises with her husband.
“Having clear skin has been phenomenal,” she says. “I never take it for granted. I constantly am aware of it and feel very blessed.”
While other medical concerns had her off her biologic for several months, she is awaiting clearance from her doctor to resume taking the drug.
Miller has had similar results since starting a clinical trial in July 2016 for a new biologic that was being investigated for the treatment of multiple inflammatory diseases, including psoriasis. Currently, his skin is 99 percent clear. “For the first time in my life, I feel kind of sexy,” he says. “I feel more confident. I just wish I’d had this back in my 20s and 30s and 40s.”
Despite the giant leaps made in psoriasis treatments over the past few decades, Tom says she believes there are still plenty of advances to come. Some newer biologics have fewer side effects than the early ones but aren’t as effective; others are highly effective but come with greater risks. “I think with efficacy, we’re getting there, but we still have safety to consider,” Tom says.
She also hopes to see expanded choices in topical medications, as well as less trial and error in determining which treatment a patient will best respond to. “We’re learning more and more about how to better tailor medications for the patients,” she says.
Ultimately, until a drug can completely shut down psoriasis — meaning people like Engel and Miller could live disease-free without regular treatments — there is work to be done. “There’s still quite a lot of room” for progress in treatment, Tom says. “I don’t think we’re at the point of a cure.”