- By Michelle Roberts
- Digital Health Writer
Some call ruxolitinib a miracle cream because it can restore skin to its natural color and remove whitened patches.
Others wonder if vitiligo should be celebrated rather than masked or corrected.
Ruxolitinib (brand name Opzelura) should be prescribed by a doctor because the treatment requires monitoring.
This can affect the body’s immune system, which can make users more susceptible to infections such as coughs and colds, for example.
A stronger pill formulation of the same drug is already used to treat certain cancers.
While testing the vitiligo cream, some users developed acne and redness affecting the skin area where it was applied. But it was an effective treatment for nonsegmental vitiligo – the most common type – where patches or patches of depigmentation appear on both sides of the body.
About half of those who used it twice a day saw significant improvement, and about one in six had almost complete repigmentation within three months.
The list price for a tube is $2,000 (£1,660) in the US where it is already approved for use.
What is vitiligo and what causes it?
Vitiligo is thought to be an autoimmune disease in which the person’s own body begins to attack skin cells that make protective pigment. This causes visible bleached patches or patches that are prone to sun damage.
Vitiligo affects all races but is most noticeable in people with colored skin. It is neither contagious nor contagious.
Experts say living with vitiligo can be psychologically devastating, causing anxiety, depression, low self-esteem and even thoughts of suicide.
Consultant dermatologist Dr. Viktoria Eleftheriadou says some people with vitiligo may feel like they’ve lost their ethnic identity.
She said: “The risk may be higher in people of color because the condition is more noticeable in darker-skinned people.”
She says it would be good to offer people a choice of treatment.
Winnie Harlow, one of the world’s most recognizable supermodels, embraced vitiligo rather than trying to hide her plaques, although she said she found vitiligo “incredibly isolating”.
“I vividly remember being in third grade and trying to befriend two girls who were running away from me because their mothers didn’t want them to ‘catch’ what I had, like if I was contagious,” she told Cosmopolitan magazine.
She describes her skin condition as one of her “greatest gifts”.
“It taught me, since I was a little girl, to use it as a megaphone: to be louder, more proud and always fueled by passion and love. It helped me to look beyond my own cover – and everyone else’s as well.”
Emma Rush, founder and managing director of Vitiligo Support UK, says that while it’s great to see models raising awareness, “there is a gap between the average model and the average person on the street”.
She says many people find vitiligo on the face can be particularly distressing. “My face is covered in it now. I don’t recognize old photos of me from before. It’s like I’m a different person.
“I can wear makeup to cover it up, but I can’t walk around unnoticed. It helps in that first encounter so people don’t stare.
“When it starts on the face, it’s often around the mouth and eyes and those are the parts people look at. It can be a disastrous experience in a society that focuses on appearances.
“Having a condition that can turn your skin white doesn’t just impact the color of your skin. When your appearance changes, it can come with a whole host of assumptions about where you’re from and who you are. are.
“Some people say they feel like they’ve lost a depth of identity or that the disease has taken something away from them.”
She says having it as a new treatment option would be “an absolute godsend”.
Teacher Joti Gata-Aura was diagnosed with vitiligo in her early twenties. At that time, she says, she would have been willing to try anything to fix it.
“I struggled with it for a long, long time. I was constantly seeking treatments,” she said.
“I had not accepted the skin I was in.”
“I’m Indian. I’m brown-skinned – I’m not a light-skinned Asian. So when I got vitiligo, I stood out and covered my skin for many, many years.
Now 45, her perspective has changed and she is an advocate for body positivity and mentors young people to help them gain self-confidence.
“I’ve done so much work to be happy in the skin you are in and to be confident in who you are.”
She says identity is still a big issue. “My identity was stripped when I lost my pigment.
“It took me so long to accept this white skin.
“It adds, for me, the extra layer of having to… not justify myself, but explain who I am, and that can be quite difficult at times, especially now that my skin is whiter than some of my English friends. That’s difficult because I am proud of my background and my culture.”
She said people have to make their own choices about living with vitiligo.
“It might not be a disability, it might not be a disease, but people have been psychologically torn apart because of this condition and I think it’s so important that even though I’m in a good place right now, I was not in a good place when I was diagnosed.
“People are going through what I went through 20 years ago. That might be the light at the end of the tunnel for a lot of people.”
Current vitiligo treatments that cause patients to return to their natural skin color are limited and have variable effectiveness, meaning that if one treatment worked well for one patient, it might not work at all for another. according to the British Association of Dermatologists.
The most commonly used ones – phototherapy, tacrolimus and topical corticosteroids – can all have their downsides. For example, there are side effects associated with long-term use of potent topical steroids, and phototherapy sessions typically require repeat hospital visits over several months.
Ruxolitinib would need to be approved by the medicines regulator, the MHRA, to be sold or prescribed in the UK. Advisory body NICE plans to assess its merits and risks and determine whether the cost can be justified for the NHS to provide to patients.