Prurigo nodularis (PN) is an intensely itchy skin disease that significantly affects quality of life, and it can be complicated to treat. “I’m overwhelmed by this horrible invasion on my skin. I’ve tried all the treatments the dermatologist suggested, and it’s worse now than ever,” wrote a member of MyPrurigoTeam. “This has changed my whole outlook on life. I’m worried and scared.”

A supportive network of health care providers can help manage the symptoms of PN and address related conditions and concerns, making all the difference in your mental and physical health.

Although a dermatologist (skin specialist) will be the most important doctor involved in diagnosing and managing PN, there may be times when you need other doctors on your team to ensure you get the help you need to effectively manage this skin condition.

1. Primary Care Provider

PN is a rare condition, so most people aren’t sure what’s wrong until they see a doctor. Unless you already go to a dermatologist for other skin conditions, your first stop will probably be a general practitioner (GP), also known as a primary care provider or family doctor. Primary care providers may run tests — such as bloodwork to look for kidney, liver, and thyroid issues and check for infections. Based on your test results, they may make recommendations or send you directly to a dermatologist for further evaluation.

Several members of MyPrurigoTeam have said they wish they’d discussed skin concerns with their GP earlier. “I have a wonderful, understanding GP. I didn’t show him the lesions because I was too embarrassed. If I had shown him, I would probably have been diagnosed sooner,” explained one member.

In addition to referring you to a dermatologist, your primary care provider can also provide referrals to additional specialists to help with related conditions and manage symptoms of PN.

2. Dermatologist

A dermatologist will be the main specialist to diagnose and treat PN and the most important member of your health care team. They may perform a skin biopsy to confirm what’s causing your symptoms. They may look for signs of an underlying skin condition such as eczema (atopic dermatitis). Dermatologists can prescribe various treatment options to help stop the itch and give your skin a chance to heal, such as:

• Topical corticosteroids
• Cryotherapy (to freeze and flatten the bumps)
• Phototherapy
• Oral medications

It’s important to ask your dermatologist plenty of questions during visits so you can fully understand your treatment plan, including when to expect changes and what side effects to watch out for.

Some dermatology specialists are more experienced and familiar with PN than others. It’s important to advocate for yourself and let your dermatologist know if you have concerns or if your treatments don’t seem to be helping. Sometimes, getting a second (or third) opinion is necessary.

“My first dermatologist told me it was folliculitis,” said one MyPrurigoTeam member. “My second advised me to stop scratching and to see a behavioral therapist. Finally, the third diagnosed it and gave me cortisone injections once a month for three months. They also recommended a steroid ointment and advised me to use zinc-based shampoos.”

3. Allergist/Immunologist

Some people with PN may have an underlying allergy that causes pruritus (itchy skin). An allergist can test your skin for allergies using a skin prick or scratch test. During the test, they’ll gently prick or scratch your skin with an applicator that contains a small amount of a potential allergen (like pollen or mold). Then, they’ll observe how your skin reacts. Allergists can also perform patch tests, food challenges, and blood tests to check for allergies to certain foods and substances. Another type of allergist, called an immunologist, focuses more on immune system disorders.

A member of MyPrurigoTeam said that their dermatologist and allergist worked together to determine their triggers. “My PN is due to an allergy to cobalt and iridium. These are added to titanium for implants. A dermatologist did the biopsy, and an allergist did the patch tests to pinpoint the allergy. I also have other autoimmune issues that may have made me susceptible,” they explained.

If it turns out that you have allergies, an allergist can recommend over-the-counter or prescription antihistamines and other treatments to control how your body reacts to triggers. They may also provide advice on how best to avoid the allergens that trigger your symptoms.

4. Rheumatologist

Doctors haven’t figured out the exact cause of PN, but they think it may be related to altered immune system function that affects nerves in the skin and causes itchiness. In addition to an immunologist, you may be referred to a rheumatologist if your health care provider suspects you have an autoimmune disease like lupus.

Rheumatologists are specially trained to identify rare diseases. During your visit, they’ll want to know about your family's medical history and may run lab and imaging tests to learn more about what’s happening with your health. They may recommend immunosuppressive drugs — medications to suppress an overactive immune system — to reduce your symptoms and help stop the itch-scratch cycle.

5. Mental Health Practitioner

PN is a skin condition and is certainly not “all in your head.” However, research shows prurigo is often linked to anxiety and depression and can be worsened by stress. Because psychotherapy and relaxation techniques can help manage these aspects, there are good reasons to consider adding a mental health therapist to your medical team.

“It’s a vicious cycle,” said a MyPrurigoTeam member. “I understand stress can make it worse. If you had no psychological problems before PN, you probably have them now. The constant distress of the itch, scarring, and lack of sleep can impact your quality of life.”

Some people become anxious or depressed after developing skin symptoms, while others struggled with their mental health before PN.

“This is the worst thing I have ever gone through, and I feel all alone,” shared one member. “I don’t know what’s causing it. I don’t have any other medical issues or underlying causes. I never had anxiety before PN, but now I do.”

Another member responded with encouraging words: “Keep pushing until you can connect with a doctor who’s willing to work for you. I know it's a long road, but it’s one worth traveling.”

Mental health professionals can offer relaxation techniques, sedatives (for better sleep), and antidepressants if needed. Studies support the benefits of psychotherapy for PN, so finding a qualified provider can be an important part of your treatment plan.

Advocating for yourself, getting mental health support, and making time for self-care are critical to living well with PN. Once you find the right health care team and support network, you’ll be better equipped to navigate PN’s ups and downs.

Additional Specialists for Comorbidities

PN has also been linked to other medical conditions, including diabetes, end-stage kidney disease, hepatitis C, untreated HIV infections, and lymphoma (cancer of the lymphatic system). These may require additional specialist visits, including:

• Endocrinologist for diabetes
• Nephrologist for kidney disease
• Infectious disease specialist or gynecologist for HIV
• Hepatologist for hepatitis or other liver diseases
• Hematologist or oncologist for lymphoma

The co-pay or out-of-pocket expenses to see a specialist can be higher than a visit to a general doctor. However, specialists have the expertise to recommend the right type of tests and most appropriate treatments, ultimately saving you time, frustration, and, potentially, money. Seeking early treatment for your health concerns is the best way to prevent additional complications. Ultimately, it never pays to procrastinate on your health.

Connect With Others Who Understand

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 PN.

Have you seen specialists for your PN? Do you have tips for others who are still looking for diagnosis and proper treatment for their prurigo? Share your experience in the comments below, or start a conversation by posting on your Activities page.