Sarah Hayden has very high necks. She has thick knots and a lot of make-up, all to cover the white patch on her face, neck, hands and knees.
At the age of 23, Hayden was diagnosed with vitiligo, a non-infectious skin disease that causes loss of pigmentation. It first hit the back of the neck, then, like many, slowly progressed under the eyes and across the face, before jumping to the knees, elbows and toes.
Once, when she got into the hot tub, a woman said that people with skin problems should not be in the hot tub and got out with her daughter. Hayden pretended not to care. It still feels beautiful inside.
It wasn't until she enrolled in clinical trials for an experimental drug and her vitiligo began to subside that she "realized that my skin condition was affecting me more than I thought," says Hayden, 41, of Hood River, Oregon. .
The herbal cream I used in this trial, ruxolitinib, was approved by the Food and Drug Administration this summer. The New England Journal of Medicine published a study Wednesday afternoon showing that ruxolitinib cream was very effective in a third of patients who used it for at least six months.
What is vitiligo and its treatment?
Between half and 2 percent of people worldwide have vitiligo, which is now considered an autoimmune disease in which the immune system attacks the skin cells that supply the skin with pigment.
Celebrities with vitiligo include Michael Jackson, model Winnie Harlow, actor and director Jon Hamm, comedian Steve Martin, commentator and comedian Joe Rogan, and NFL player turned coach Karl Dunbar.
This condition can be especially worrying for people with dark skin because the lighter spots are more noticeable.
The only treatment approved by the US Food and Drug Administration (FDA) removes more color to prevent scarring, sometimes than restoring the skin's natural color than ruxolitinib cream.
said the doctor. David Rosemarin, lead author. In the new study.
How does ruxolitinib work?
Rosmarin says the use of ruxolitinib cream reflects a new understanding of vitiligo. It works by suppressing an overactive immune response. "Now we're better at fine-tuning and balancing that arm of the immune system," Rosemarin said.
About 30% of 450 people who received active treatments in two studies saw a significant improvement in facial pigmentation after six months. Half did so after a year of treatment, indicating that the cream strengthened over time. More than 80% of the subjects in both trials were white and only 3% to 5% were black or Asian.
Formulated as a cream, Rosmarin says it doesn't affect the whole body, so side effects are relatively minor, and the cream is usually used for acne.
Ruxolitinib cream seems to work on the head and neck, where the hands and feet are difficult to repigment, says Rosmarin. It is not known whether a person can stop after taking ruxolitinib for a while, or whether the vitiligo will return without a fixed dose.
Rosmarin said that commercial insurers and Medicare are covering ruxolitinib cream now that "there is broad agreement in the medical community that this is a disease, not a cosmetic one, and the treatment should be covered." A tube of the cream costs about $2000 and can last from a few weeks to a few months, depending on how much skin needs to be covered.
The length of time the patient had vitiligo did not affect the chance of success.
said the doctor. Brett King, who was not directly involved in the research but consulted with Incyte. , a Delaware company that makes ruxolitinib cream and sells it under the brand name Opzelura.
Rosmarin said researchers are also developing another way to treat vitiligo for people who don't see much improvement with ruxolitinib cream.
He said the recent study and approval of ruxolitinib cream "paves the way for other treatments that will hopefully emerge." "This is just the beginning."
The origins of this new approach date back to 2017, when King, a professor of dermatology at Yale University, decided to test a rheumatoid arthritis drug in mice that worked similarly to Ruxolitinib. And it seemed to help him, so he gave it to a patient who had "nose to toe". His marked improvement was our "first hint" that his approach might work.
"When you're taking notes, but you're fundamentally rooted in the science, not just the occasional note, it leads to a paradigm shift in the way we think about and treat disease," King said.
Ruxolitinib's success will encourage other pharmaceutical companies to develop treatments for vitiligo, he said.
Because the benefits of ruxolitinib cream have taken so long to learn, it will be useful to find ways to distinguish between patients who respond well and those who do not, Dr Leif Edsmo wrote in an editorial introducing the new accompanying study.
Edsmo, MD, a dermatologist and researcher at Sweden's Karolinska University Hospital, noted that it was unclear what would happen if patients stopped using the cream and was concerned about the lack of diversity among the article's participants, who were mostly white. wash.
However, thanks to ruxolitinib, he wrote, "Vitiligo patients finally have hope for an effective treatment."
"He gave me back something I lost."
Hayden is one lucky patient.
The cream returns about 90% of the pigment back to the face. Even hands, which were considered the hardest to reach for drugs, were mostly washed.
“It gave me something back that I lost,” Hayden, who wore a V-neck and a gold necklace, said during a recent video call. On weekends, she no longer insists on putting on her makeup before leaving the house.
Hayden, who was a teacher in her city's school district, had no side effects from the cream and would easily spread it on her face, chest and hands twice a day for two years of her life. "It's part of your morning routine, and after you brush your teeth, it's part of your bedtime routine," she says.
The treatment changed his relationship with the sun. Previously, she would wear high protection sunscreen, a hat and long sleeves if she was out in the sun for a long time. With vitiligo he said "you are normal or brown", not brown.
In the experiment, he said, he was encouraged to limit sun exposure to promote skin renewal. "I feel like I'm in the sun now, it makes me look younger and it's not harmful," she said. "I have to be careful, but it's not the same burden as before."
Hayden said she is grateful to be a part of the study to help others avoid the same challenges she faced.
"It really ignited the 'cause' to get involved in the lawsuit," he said. "Not just for my hope and my joy - 100% he did and would do it again in a heartbeat - but for the opportunity to make it available to others with Vitiligo."
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Abstract : New treatment reverses skin discoloration in some people with vitiligo (21 Oct 2022) Accessed at https://medicalxpress.com/news/2022-10-treatment-skin-vitiligo.html.
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