Living with prurigo nodularis can be hard sometimes. One MyPrurigoTeam member shared, “I’ve been quite miserable the last few days.” Another said, “I’m itchy, itchy, itchy and trying not to scratch. I managed to sleep for a few hours.”
If you have prurigo nodularis (PN), you might be wondering if you’ll have to live with it forever. As a chronic inflammatory skin condition, PN can lower your quality of life and interfere with your mental health.
The intense itching of PN — also called nodular prurigo — can lead to hard, itchy bumps that develop under your skin. These symptoms, including constant scratching and poor sleep quality, may make it difficult to enjoy your life and, for some, may result in social isolation. If you want to know how long you’ll be living with PN, read on to see what the research has to say.
PN is a chronic skin disease with no known cause. Chronic means it will likely last for years and may never go away entirely — a circumstance known as remission. Some people who develop PN don’t experience remission and live with PN symptoms for the rest of their lives.
However, that doesn’t mean you’ll never experience relief or remission. Overall, the prognosis (outlook) is good, although you might have to manage recurring episodes or skin lesions and they may not disappear entirely after the itching is gone.
We’ll talk more about treating PN below, but one important aspect is to find the right specialist, identify any underlying conditions, and get appropriate treatment. When you treat an underlying condition, PN symptoms are more likely to go away — and stay away — for extended periods of time.
Interrupted sleep is a common experience among MyPrurigoTeam members, as are other disruptions to their daily activities. One member explained, “I work at a hospital and wear arm sleeves. It’s a new job, and I’m scared to try to make new friends because I’m terrified of what they’ll think when they see my arms and legs.”
Between the itching, redness, and visible bumps, PN can influence nearly every aspect of life. That’s why so many people who live with the condition want to know how to get rid of it or at least control it.
No one knows exactly what causes PN, but researchers do know that it’s tied to what is called the itch-scratch cycle. Something makes your skin itch, so you scratch it. Over time — usually six to eight weeks of intense scratching — bumps and lesions show up on your skin. These intensify the itching, so you scratch more, and the problem gets worse.
However, no one knows why some people who itch end up with PN and others don’t. Additionally, while some people have other conditions that cause the initial itchiness, others do not. In these cases, it isn’t clear what makes skin start itching in the first place.
Some people are more likely to develop PN than others. It’s more common in people who are Black, especially if they also live with atopic dermatitis (the most common form of eczema) and are over 50 years of age. PN is also most common in people ages 61 to 65.
PN is more likely to show up in people who live with certain other chronic conditions. It’s important to note that some of these are skin disorders that can cause itching, but others are not. They include:
When you’re trying to reduce or eliminate the symptoms of PN, it’s important to find the right treatment for your body. There are also some things you can do to reduce the mental load of living with PN to improve your overall sense of wellness and quality of life.
When PN is related to another condition, identifying and treating it may help manage PN symptoms or itching and scratching. Note that treating an underlying condition doesn’t always mean that PN will go away. Symptoms may improve, but PN can be persistent, and you may continue to experience symptoms even if your underlying condition is under control.
It may take time, patience, and many tries to find an effective medication, procedure, or combination of treatments for PN. You have several options, including:
Dupilumab (Dupixent) is the first (and currently only) medication approved to treat PN. It works as an immunomodulator — it stops certain immune system responses associated with inflammation. One clinical study with 64 participants showed that, after four months of treatment, 45.3 percent of people experienced complete remission. Among the people who didn’t experience either complete or partial remission, itching decreased dramatically. Researchers reported that there weren’t any serious side effects during the study.
Most people had to take dupilumab consistently for two months to see results and stick with it for at least four months to get the maximum benefit. Researchers also noted that people with certain underlying conditions, like atopic dermatitis, may need to take dupilumab longer to see results.
Research and clinical trials on dupilumab and other new treatments are ongoing. Researchers still don’t know if results from dupilumab will last or who it will work best for. If you’re living with PN symptoms, talk to your doctor about which treatment or combinations of treatments you can try for relief. Be patient and stay hopeful — give each treatment time to take effect, and remember, the next one might work for you. In addition to dupilumab, other medicines known as Janus kinase (JAK) inhibitors, recently approved for atopic dermatitis, are being tested for PN.
In addition to seeking effective medical treatment for PN, it’s important to take good care of yourself. Living with persistent, severe itching takes its toll on your mental health. Itching can cause insomnia and depression.
Talking to a professional therapist or counselor can help you deal with stress, a known trigger for PN symptoms. Support groups, either online or in person, can help you find solidarity and hope.
Stay in touch with your health care team and let them know about any changes in your symptoms or challenges sticking with treatment. They can help you overcome difficulties and let you know when it’s time to try a new treatment or combination of treatments.
Your dermatology team can also help you find an effective care regimen to calm itchy skin and protect it.
MyPrurigoTeam is the social network for people with prurigo nodularis and their loved ones. On MyPrurigoTeam, members come together to ask questions, give advice, and share their stories with others who understand life with prurigo nodularis.
How long have you lived with prurigo nodularis? Have you found any treatments that brought remission or relief? Share your experience in the comments below, or start a conversation by posting on your Activities page.