Learning About Cutaneous (Skin) Sarcoidosis

Sarcoidosis (say "sar-koy-DOH-sus") is a disease that causes the immune system to form tiny clumps of inflamed tissue. These clumps are called granulomas. They can happen in different parts of the body. When they affect the skin, it is called cutaneous sarcoidosis.

The skin is the second most commonly affected organ in sarcoidosis, after the lungs. Cutaneous sarcoidosis affects about 25% to 35% of people with sarcoidosis. It can appear on its own or along with sarcoidosis in other parts of the body. It's sometimes called a "great imitator" because it can look like many other skin conditions.

The exact cause is not fully known. Researchers believe that in people who are prone to the condition, it may happen when the immune system overreacts to something. This includes bacteria, viruses, dust particles, or chemicals. This condition is not caused by anything you did, and it is not contagious.

Some people are more likely to develop cutaneous sarcoidosis, including:

• People with a family history of it.
• African American women. They're more commonly affected and may have more severe skin symptoms.
• People between the ages of 20 and 60.

It can also develop in areas that have had skin injuries such as scars, tattoos, or piercings.

Talk to your doctor if you have questions about your risk.

Symptoms can vary from person to person. Common skin changes include:

• Small bumps (papules). Bumps are often reddish brown, violet, tan, or brown. They're usually painless, and they're common on the face. They happen most often around the eyes and on the neck.
• Raised patches (plaques). Patches are smooth or scaly, reddish brown, purple, or brown. They often appear on the face, scalp, arms, back, or legs. They can cause scarring as they heal.
• Lumps under the skin (nodules). They usually appear on the arms. They may be painless or slightly tender.
• Changes to scars, tattoos, or piercings. You may develop tiny bumps or firmer, lumpier skin in those areas.
• Lupus pernio. This is smooth, shiny lumps or raised patches that are red to purple in color. They appear on the nose, lips, cheeks, or ears. They are often linked to sarcoidosis in the lungs or other organs.
• Erythema nodosum. This is a tender rash, usually on the shins. When this is the first sign of sarcoidosis, the condition often gets better on its own.
• Nail changes. These can include changes in color, nails lifting up, or nails that are deformed.

Other symptoms may include itching, swelling, warmth, or tenderness in the affected area.

On darker skin, skin changes may appear darker or lighter than your natural skin color. On lighter skin, changes in color tend to be red or pink.

Diagnosis can be difficult because the skin changes can look like many other conditions. Your doctor will examine your skin and ask about your medical history. A skin biopsy is usually needed to rule out other skin conditions. This means a small sample of skin is removed and looked at under a microscope.

Your doctor may also order other tests to check whether sarcoidosis is affecting other parts of the body. These tests may include chest X-rays, an electrocardiogram (ECG), blood tests, or an eye exam.

Not everyone with cutaneous sarcoidosis needs treatment. In some cases, it gets better on its own within a few weeks to months.

When skin changes bother you, are spreading, or affect your appearance, your doctor may recommend treatment. Common options include:

• Topical corticosteroids. These are creams or ointments applied to the skin to reduce inflammation.
• Injected corticosteroids. These are steroid injections directly into the affected skin.
• Oral corticosteroids. These are steroid pills for more widespread or severe cases.
• Antimalarial drugs. These are often used for milder cases.
• Other medicines. For severe cases, additional medicines such as immunosuppressants or biologic drugs may be prescribed.

Cutaneous sarcoidosis can come and go. Some people have flares over months or years. Keeping up with your doctor appointments can help you stay on top of any changes.