One of the most common questions posed by members of MyVitiligoTeam is, “Has anyone tried Opzelura? How is it working for you?”

Many members are using ruxolitinib, sold under the brand name Opzelura. It’s a new topical Janus kinase (JAK) inhibitor approved to repigment vitiligo patches. MyVitiligoTeam conducted a survey of its members to understand their experiences with the drug. Ninety-three adults responded to the survey.

Below are six key findings you may find helpful as you consider whether to try this topical medication.

1. It Takes a While To Work (as Advertised)

Seventy-four percent of survey respondents who had been using Opzelura for six or more months had seen some level of repigmentation. It usually took one to three months after starting the treatment before they noticed any changes in pigmentation. For many survey respondents, it took between four months and a year before the level of repigmentation was greater than 50 percent. This is consistent with the clinical trial results and the messaging on the Opzelura website.

Dr. Amit Pandya, vitiligo specialist and president of the Global Vitiligo Foundation, explained, “When you spread Opzelura on your face, it first has to clear away the T-cells that are killing the melanocytes in your skin. Only after that happens do the melanocytes wake up, rise through the hair follicles in your skin, and begin to repigment your skin. Typically that takes at least three months.”

A small subset of respondents — 16 percent — said they noted a response within one to three weeks. “It is possible that Opzelura might stop or slow the spread of active vitiligo quickly,” explained Dr. Pandya. “Opzelura is also approved for eczema, so it may help stop the itching that people feel as well.”

2. For Many, the Level of Pigmentation Increases With Longer Use

Among the 74 percent of survey respondents who had seen an improvement, the percentage of respondents with more than 25 percent repigmentation increased the longer they had been on Opzelura. The chart below shows that half of the people who took the drug for at least six months (and had any response) saw more than 25 percent repigmentation. Only a quarter of those who had used the treatment for less than two months had more than 25 percent repigmentation.

Among those using Opzelura for six or more months, about half said their level of repigmentation was 25 percent or less, while 36 percent shared their repigmentation was between 51 percent and 75 percent. Compare that to people who had been taking Opzelura for less than six months, and you find that only 12 percent had seen repigmentation greater than 50 percent.

It should be noted that only 47 percent of the 93 survey respondents were on Opzelura for more than four months, so many had only just begun to see repigmentation.

MyVitiligoTeam ambassador Alicia Roufs has been using Opzelura twice per day as prescribed, and sharing photos of her level of repigmentation on Facebook. She gave us permission to share these photos to show you what levels of repigmentation looked like for her over three months.

3. Opzelura Works Better on the Face (and Other Places With Hair Follicles That Get Sunlight)

The survey did not ask on which parts of the body people were using Opzelura, so it cannot accurately report on repigmentation by area of the body. However, we did ask respondents whether they found Opzelura worked better on some parts of the body over others. Among the 49 people already seeing improvements from Opzelura, 82 percent indicated it has worked better on some parts of the body than others. The following chart shows that 21 people said it worked best on their face.

As Dr. Pandya explained, because melanocytes live in the base of hair follicles, Opzelura tends to work best in areas of the body that contain hair follicles. Our faces tend to have a lot of short, fine vellus hair (some call it “peach fuzz”), whereas our hands do not. As a result, Opzelura tends to work better on the face than the hands. Dr. Pandya also noted that repigmentation requires some exposure to light (either natural or narrowband UVB phototherapy), so areas that are covered by clothing are less likely to respond as well.

Indeed, survey respondents who reported they were undergoing UVB phototherapy along with Opzelura reported higher satisfaction levels than those using Opzelura by itself. Thirty-two percent of those using UVB therapy with Opzelura are “very satisfied” or “extremely satisfied” with their treatment versus 19 percent of those only using the topical.

4. Side Effects Are Usually Mild and Tolerable

Seventy percent of survey respondents reported that they experienced no side effects from taking Opzelura. Those who did experience side effects listed all the common, mild side effects (such as acne, itching, rash, and redness) found in the clinical trial results and discussed on the drug’s website.

For the majority of people, the side effects are not seen as a significant hurdle. Dr. Pandya explained that between 7 percent and 10 percent of his patients have these side effects. Typically, he is able to treat acne using a separate treatment, so his patients can stay on Opzelura. It is OK to ask your dermatologist for help if you’re experiencing any of these side effects, as they can likely help you take care of those while taking Opzelura.

5. Insurance Coverage and Financial Assistance Are Available

A lot of people experience challenges getting their insurance to cover Opzelura. If you do not have insurance or financial assistance, one tube can cost $2,000. Assuming you go through a tube per month, that would be $24,000 in out-of-pocket costs per year if you had no insurance. Obviously, it’s important to get insurance coverage and other financial assistance.

Seventy-four percent of those surveyed reported that they received some health insurance coverage for Opzelura. Thirty-four percent reported that getting insurance was “easy,” while another 40 percent received insurance only after their doctor sent in an appeal or did extra work on their behalf to communicate with the insurance company.

If you are interested in taking Opzelura and have commercial insurance, and you get denied for coverage at first, don’t give up. Ask your doctor for assistance on an appeal with the insurance provider. While the appeal may not always work, it is worth trying.

Twenty-six percent of survey respondents reported that they have been unable to get insurance coverage for Opzelura at all. In that instance, you can review the financial assistance programs offered by the manufacturer to see if you qualify for support.

Thirty-one percent of survey respondents said they have secured financial assistance from Incyte Dermatology, the manufacturer of Opzelura. If you have commercial prescription insurance, for instance, Incyte’s copay card may help you get Opzelura for a $0 copay. If your commercial insurance does not cover Opzelura, the copay program could help you get Opzelura for $35 per prescription at certain pharmacies.

Many members reported receiving 5 ounce sample tubes of Opzelura from their dermatologists, which enabled them to start treatment while sorting out insurance coverage and financial assistance.

6. Most Respondents’ Satisfaction Increased the Longer They Used Opzelura

Many survey respondents reported their satisfaction with Opzelura increased the longer they used the drug. For those who had been on Opzelura for more than six months and noticed a change in pigmentation, 42 percent reported being “very satisfied” or “extremely satisfied” with Opzelura and an additional 37 percent were “somewhat satisfied.” That’s 79 percent in the “somewhat” to “extremely” satisfied range.

For people who had been taking Opzelura between two and six months, only 17 percent reported being very or extremely satisfied, and 31 percent were somewhat satisfied.

Expectations About Results

One interesting finding from the survey is that people who reported seeing repigmentation from Opzelura quickly (in one month or less after starting the drug) had much higher satisfaction rates than those for whom it took longer to see a difference.

People who are still waiting to see a response from Opzelura reported very low satisfaction rates. This suggests that not all dermatologists are properly setting expectations about how long it could take to see a benefit from Opzelura. The general consensus is that, if you choose to try taking Opzelura, you should commit to doing it for at least four to six months to give it time to start showing a benefit.

Opzelura is recommended to be applied twice per day. Some people find that routine too burdensome to maintain. Or, if they are trying to make one tube of Opzelura last for more than one month, they do not apply it twice per day. That can lead to a lower rate of repigmentation.

Opzelura doesn’t work for everyone. The clinical trials for Opzelura showed that approximately 30 percent of people treated with Opzelura reached at least 75 percent improvement in a score used to measure repigmentation at week 24, compared to approximately 8 percent and 13 percent of those treated with a placebo.

MyVitligoTeam Members’ Experiences

MyVitiligoTeam members who participated in the survey shared a range of experiences with the drug and their levels of satisfaction.

• “My dermatologist said the best-seen results start at three months and may take up to a year.”
• “I used it on my forearm for four months and saw lots of repigmenting. I am now using it on my other forearm.”
• “It works better on my face, stomach, arms, shoulders, and back. Legs are repigmenting at a slower pace.”
• “I use it twice a day with phototherapy.”
• “I am not consistently applying Opzelura. At this time, I have not had significant repigmentation.”
• “I’m a little disappointed that I haven’t seen noticeable improvement.”
• “Still waiting to see noticeable results. Hoping for the best.”

Thanks to all the MyVitiligoTeam members who participated in the survey. If you have more questions about the survey or Opzelura, please post them in the comments below and we’ll try to find answers for you.

Note: This survey was conducted independently by MyVitiligoTeam with input from Dr. Amit Pandya and Alicia Roufs. It was not sponsored by Incyte Dermatology.

Talk With Others Who Understand

MyVitiligoTeam is the social network and support group for people with vitiligo and their loved ones. On MyVitiligoTeam, members come together to ask questions, give advice, and share their stories with others who understand life with vitiligo.

Have you tried Opzelura? Share your experiences in the comments below, or start a conversation by posting on your Activities page.

In partnership with the Global Vitiligo Foundation, which strives to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.