How Does Dermatomyositis Affect Your Skin?

Dermatomyositis is a type of autoimmune disease that causes inflammation and muscle weakness. As a form of idiopathic inflammatory myopathy (IIM), it affects multiple parts of your body, like your:

• Skin
• Skeletal muscles
• Lungs
• Heart
• Digestive tract

But it’s your skin, specifically, that’s most targeted with this condition.

Dermatologist Anthony Fernandez, MD, PhD, explains how dermatomyositis affects your skin and what you can do to find relief.

How does dermatomyositis affect your skin?

Your skin is your body’s largest organ. So, the kinds of symptoms you have vary depending on the location of inflammation.

“For a lot of people, a skin rash is their first sign of dermatomyositis,” says Dr. Fernandez. “We can often make a diagnosis just by looking at your skin and the pattern of active inflammation that’s causing your symptoms.”

Here are the most common skin-related symptoms you may expect when you’re living with dermatomyositis.

Heliotrope rash

Heliotrope rash is a common early sign of dermatomyositis. This dark red or purple rash causes swelling around your eyes and on your eyelids. It can often be itchy and uncomfortable.

“I’ve treated people whose eyes are almost closed shut because of the degree of swelling, so it can indirectly affect your vision,” states Dr. Fernandez. “Heliotrope rash alone is enough to bring people to a healthcare provider to seek diagnosis and treatment.”

If you’re looking for immediate relief until you can get to your doctor’s office, he recommends applying over-the-counter hydrocortisone cream or a moisturizer that’s designed for sensitive skin.

Itchy skin

Itchiness is often the most persistent symptom of dermatomyositis. For some, it’s mild. For others, it can be a severe, burning itch that seems to never go away.

“Itching tends to be more severe in dermatomyositis when it affects your scalp,” notes Dr. Fernandez. “It has a burning quality that makes it different from rashes you get with poison ivy or eczema. We don’t understand why, but it might have to do with how dermatomyositis inflammation affects the nerves in your skin.”

Gottron’s papules

This type of skin rash causes small, red bumps on the skin that covers your knuckle and toe joints. Doctors don’t entirely know why Gottron’s papules only affect these joints, but Dr. Fernandez says there’s a theory that it could be triggered by frequent stretching of the skin overlying the joints and trauma.

“Gottron’s papules are tender,” he explains. “When you move your hands and fingers or try to grip something, it can make the tenderness worse and trigger itching.”

Gottron’s sign

This is very similar to Gottron’s papules, except instead of bumps, you develop red, itchy patches on your elbows and knees.

“If you close your eyes and rub your fingers over the affected area, it feels like normal skin. It’s not raised like a papule,” clarifies Dr. Fernandez. “But it still causes redness and irritation.”

Mechanic’s hands

Although more common with antisynthetase syndrome, mechanic’s hands can develop with dermatomyositis over time. Inflammation can sometimes cause the skin on the palms of your hands and the sides of your fingers to thicken, crack and peel. Known as hyperkeratosis, this rough, cracked appearance is what gives it its nickname. It’s not usually itchy, but it can be painful.

Poikiloderma

“Poikiloderma is a specific type of skin damage that dermatomyositis causes when left untreated,” explains Dr. Fernandez. “Because of chronic inflammation, over time your skin can thin out and have variable pigment changes.”

These changes may cause some patches to become darker or lighter over time.

Photosensitivity

Dermatomyositis is a photosensitive condition, meaning sun exposure can trigger a rash or aggravate symptoms. Because of this, you’ll need to protect yourself from the sun by wearing sunscreen.

“The sun activates dermatomyositis inflammation,” warns Dr. Fernandez.

Nail changes

Your nails are made up of specialized skin cells — so they can be affected by the same inflammation that causes dermatomyositis in your skin.

“Usually, the nail plates themselves aren’t affected, but it’s common to develop dilated blood vessels in your nail folds and other nail changes,” says Dr. Fernandez. “In some cases, you may get overgrowth of the cuticle that gives it a ragged look, and that can be uncomfortable.”

Calcium deposits

Calcinosis cutis can occur anywhere on your skin, including your:

• Face
• Fingertips
• Knees
• Elbows

These hard white or yellow bumps of calcium deposits come in different shapes and sizes and may sometimes cause pain or discomfort. When there’s a lot of calcium buildup, the pain can make it difficult to move.

“With dermatomyositis, calcium deposits may be bigger and deeper,” says Dr. Fernandez. “In severe cases, it can feel like a sheet of rock underneath your skin because there’s so much calcium under the surface.”

How to find relief for your skin

“It’s very common to get myositis under control, but for the skin symptoms to still be active,” says Dr. Fernandez. “If it’s bothersome enough, we can provide additional treatments that target your skin directly.”

If your skin isn’t clearing up or you get new or worsening symptoms, talk with your healthcare provider. They may recommend:

• Topical anti-inflammatory creams or lotions for immediate relief
• Oral anti-inflammatories, like corticosteroids
• IV infusion treatments

“Following the general guidelines for living with an autoimmune disease can also help relieve your symptoms long term,” says Dr. Fernandez. “Things like moderate exercise, an anti-inflammatory diet, adequate restful sleep and reducing stress can all strengthen your immune system and help calm inflammation.”