GPP & ME
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GPP stands for generalized pustular psoriasis (sometimes called pustular psoriasis or von Zumbusch psoriasis). It is a chronic, persistent disease that causes ongoing inflammation throughout your body. There is no cure — it requires ongoing management.

Many people first experience GPP around age 40, but it can also occur at younger ages. While it affects people differently, women have GPP twice as often as men. GPP is NOT contagious and can be treated. You can learn more about the disease here.

No. GPP is a rare disease, which means many people (including your dermatologist) may not know what it is. In the US, GPP is estimated to impact less than 1 out of every 10,000 people.

Finding support often means being your own best advocate: gathering information, understanding all of your treatment options, and directly asking for what you need from friends, family, colleagues, and your doctor.

The symptoms of generalized pustular psoriasis (GPP) may appear both on and beneath the skin and can vary over time. Common skin symptoms include painful pus-filled blisters called “pustules” that can appear suddenly and cover large areas of the body. While they are forming, some people say pustules can look like pimples or whiteheads. Skin can also swell, burn, become red, dry, or scaly; in people of color, skin can appear purple, brown, or a shade darker than natural skin tone. Other symptoms include fever, chills, exhaustion, joint pain, nausea, and general discomfort or weakness. You can find photos and more information about common symptoms here.

In generalized pustular psoriasis (GPP), flares describe sudden, intense symptoms that appear suddenly, including episodes of widespread pustules that can occur without warning and become severe. Triggers of flares can be different for each person. Common triggers include infection, stress, stopping steroids, and pregnancy. Importantly, you can experience significant GPP symptoms even in the absence of flares. Even in between flares, skin can be red, have small blisters, and scale.

GPP can be mistaken for plaque psoriasis, including by dermatologists, but they are different diseases caused by different processes in the body. GPP is caused primarily by the IL-36 pathway while plaque psoriasis is primarily driven by the IL-17 or IL-23 pathways. Since each disease is different, knowing which one you may have or whether you live with both conditions is important. Learn more about what happens inside the body of someone living with GPP here.

Generalized pustular psoriasis (GPP) is caused by an imbalance in a specific part of the body’s immune system called the interleukin-36, or IL-36, pathway. The job of this pathway is to help protect the body from injury or infection. In people with GPP, the IL-36 pathway is out of balance, which can cause these cells to overreact. This causes inflammation throughout the body. Take a closer look at the science behind GPP here.

If you suspect you may have GPP, it can help to see a specialist who has experience with the disease and to learn more about it before your conversation. Your doctor may ask about your symptoms, medical history, and any family history of skin conditions. They may also use a blood test to confirm your diagnosis. You can find a doctor who has experience with GPP here.

Regardless of whether symptoms are mild or severe, it’s important to get appropriate treatment as soon as possible. The goal of GPP treatment is to achieve long-term protection from flares and help daily life get back to normal.

GPP can lead to life-threatening complications, including sepsis or organ failure, requiring emergency care. Your doctor can explain your treatment options. You can find a doctor who has experience with GPP here.

To help address GPP symptoms, it’s important to address the cause: ongoing inflammation throughout the body. Systemic treatments — or medicines that move throughout your body — are designed to help control inflammation. Your dermatologist may also recommend topical treatments like moisturizing creams or hydrotherapy to help ease discomfort on the skin.

There are different systemic treatments for different diseases, so it’s important to find the right one for you. For instance, systemic treatments designed for plaque psoriasis do not address the primary cause of inflammation in GPP, even if some symptoms may feel a bit better. It’s important to treat your specific condition — being proactive with your doctor to ask about all your options can help you find a care plan that works best for you.

Taking an active role in your care is critical when living with a rare disease. Since very few people have experienced generalized pustular psoriasis (GPP), it can be difficult for your dermatologist to truly know what it’s like living with the disease. Some things you can do include:

  • Finding a doctor experienced with GPP: this HCP locator tool can help you find one near you

  • Getting an accurate diagnosis as soon as possible: explore steps you can take to help confirm your diagnosis and find the right care plan here

  • Build a strong, honest partnership with your doctor: find tools to support those conversations here

  • Connect with other community members for support and inspiration: this library of stories and tips from people living with GPP can be a helpful place to start

You can find resources to help support daily life with GPP here, including information about the disease, tools to help you ask for what you need, and ways to connect with others.