What Is Scleroderma, and How Do You Treat It? Symptoms, Pictures, and Treatment

Scleroderma is an autoimmune condition that causes hardening of the skin. Certain types of scleroderma (systemic sclerosis) also harden the internal organs. The name itself means just that — “scleros” is the Greek word for hard, and “derma” is the Greek word for skin. 

Symptoms of and treatments for scleroderma depend on what type you have. 

Let’s take a closer look at scleroderma through pictures, and learn more about the different types, symptoms, causes, and treatments.

Images of scleroderma

Here are some pictures of scleroderma on different skin tones. 

Scleroderma on the fingers.

Morphea (localized scleroderma) on the arm.

What are the different types of scleroderma?

There are two major types of scleroderma: localized and systemic.

Localized scleroderma (morphea)

Localized scleroderma (morphea) only affects the skin. At first, skin becomes discolored (reddish-purple or slightly darker) before it tightens or hardens. Over time, the center part of the darkened skin gets lighter, and the borders remain dark (like a ring). The remaining darkening may be permanent, but the skin softens. 

Skin changes — sometimes called “lesions” — can be in the shape of a circle or a line. They can also be more generalized, which means they can involve larger areas of skin. 

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Skin changes may itch, and they typically occur on the: 

• Arms

• Legs

• Chest

• Back

• Abdomen

When very deep, localized scleroderma may cause pain. 

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Systemic scleroderma

Systemic scleroderma (systemic sclerosis) involves the skin — and possibly the internal organs, too. In this context, the word “systemic” means more than one place. Hardening of the skin always starts at the tips of the fingers and toes, or face. From there, it may extend upward (diffuse cutaneous systemic sclerosis), or it may stay only in those areas (limited cutaneous systemic sclerosis). 

At first, skin may feel itchy, shiny, or puffy. After many years of disease, skin may soften. But fingers may become permanently bent at the joints due to skin tightening. The medical term for this is “contracture.” 

It’s important to figure out what type of scleroderma you have, since this will help decide:

• Your treatment team: A dermatologist (skin specialist) and/or rheumatologist (autoimmune specialist) can treat localized scleroderma. Systemic scleroderma always requires a rheumatologist.

• Monitoring: People with systemic scleroderma need blood and urine tests, along with heart and lung testing to watch out for internal organ involvement. People with localized scleroderma don’t need this testing, since this type doesn’t usually affect body parts other than the skin.

• Treatment and prognosis: Different factors affect treatment options and outcomes (more on this below).

How do you diagnose scleroderma?

Scleroderma is a clinical diagnosis, which means there’s no single test that diagnoses it. Healthcare professionals typically diagnose scleroderma just by looking at the skin. In some cases, a skin biopsy (taking a small piece of skin to look at under the microscope) will help make the diagnosis. For systemic scleroderma, other symptoms and certain autoantibodies (blood tests) can help confirm the diagnosis. 

What causes scleroderma?

Hardening of the skin and internal organs results from the body producing extra collagen (a normal protein in the body) where it doesn’t belong. But experts aren’t entirely sure why this happens. 

Like most autoimmune diseases, scleroderma results from a combination of:

• Genetic predisposition: Something in your genes makes you more likely to develop it.

• Trigger from the outside: Something like an infection, environmental exposure, or cancer might wake up your immune system to protect you. But somewhere along the line, the immune system gets confused and attacks your own body instead.

What are some risk factors for developing scleroderma?

Anyone can develop scleroderma, but it most often affects people in their 30s to 50s. Localized and systemic scleroderma are both more common in adults. Women are more likely to get systemic scleroderma than men, but men often have more severe disease.  

What are the symptoms of scleroderma?

The symptoms of scleroderma will depend on the type you have: localized (limited) or systemic. Localized scleroderma causes inflammatory, hard rashes. It almost never affects the internal organs, but sometimes it causes other symptoms. Examples include:

• Joint pain

• Muscle aches

• Limb contracture (bending of limbs due to hardening of the skin over joints)

• Headaches or vision changes (if lesions are on the face)

Systemic scleroderma can affect the inside organs in addition to the skin, causing a range of different symptoms. Systemic scleroderma can affect the following parts of the body:

• Lungs (shortness of breath, cough)

• Heart (palpitations, leg swelling)

• Gastrointestinal tract (heartburn, diarrhea)

• Kidneys (high blood pressure)

• Muscle (weakness of thigh muscles)

• Joints (joint pain and swelling)

• Blood vessels (Raynaud’s phenomenon)

How is scleroderma related to Raynaud’s phenomenon?

Raynaud’s phenomenon is very common in systemic scleroderma (affecting 95% of people). In fact, Raynaud’s is often the first symptom, preceding skin changes by up to 5 years. During a Raynaud’s episode, blood vessels in the fingers and toes clamp down when exposed to cold. The digits turn blue/purple, white, and then red when blood flow returns. They look like they have been dipped in paint. When Raynaud’s is severe, ulcers can develop on the fingertips. 

It’s important to remember that not every person with systemic scleroderma will develop all of these symptoms. You and a healthcare professional can work together to keep an eye out for new symptoms, and treat them as needed. 

How do you manage scleroderma?

It’s important to keep an eye on scleroderma and the organs it may affect. A healthcare professional will ask you detailed questions to screen for new symptoms and complete a thorough physical exam at each visit. 

Of note, localized scleroderma doesn’t turn into systemic scleroderma over time. It’s possible to have both conditions, but having one doesn’t mean you’re going to develop the other. 

Depending on your specific scleroderma type and symptoms, your healthcare team may also order additional testing, such as:

• Blood tests

• Urine tests

• Lung imaging (CT scan of the chest)

• Pulmonary function tests

• Echocardiogram

Cancer and scleroderma

There’s a link between cancer and systemic scleroderma, but the relationship is complex and not well understood. People with systemic scleroderma are at higher risk of cancer, so routine cancer screening is important. Sometimes people with scleroderma need more in-depth screening, but a healthcare professional can help you figure out if this is necessary. 

How do you treat scleroderma?

Localized scleroderma may not need any treatment. But skin lesions that itch, spread, or involve large areas of the body may need treatment. This can include different medications and physical therapy to help maintain strength and range of motion. 

Treatment options include:

• Topical steroid creams

• Steroid pills (prednisone)

• Immunosuppressants (like methotrexate, mycophenolate)

• Phototherapy (ultraviolet light exposure from a special machine)

Treatment of systemic scleroderma depends on what organs are involved and how symptoms affect your quality of life. There’s no one-size-fits-all approach. People with milder scleroderma symptoms may not even need treatment. 

Treatment of systemic scleroderma may include:

• Immunosuppressants for extensive skin, heart, lung, muscle, or joint involvement (methotrexate, mycophenolate, Actemra)

• Blood vessel dilators for Raynaud’s phenomenon (amlodipine, nifedipine, sildenafil)

• Blood pressure medications for kidney involvement (ACE inhibitors)

• Antifibrotic medications for scarring in the lungs (nintedanib)

• Heartburn medications for gastrointestinal system involvement (pantoprazole, famotidine)

Of these treatments, only Actemra and nintedanib are FDA approved for the treatment of lung disease in systemic sclerosis. The other medications listed are prescribed “off-label.” But studies support the use of these medications in people with systemic sclerosis. That’s why rheumatologists commonly prescribe them.

What are self-care tips for managing scleroderma?

If you have scleroderma, practicing regular self-care is important. It can help you manage the condition and maintain your overall well-being. Here are some self-care tips to follow: 

• Maintain a healthy lifestyle and diet.

• Don’t smoke.

• Manage stress with mindfulness or other techniques. 

• Exercise regularly. 

• Stay warm. 

• Keep skin clean, dry, and regularly moisturized. 

• Find support. 

How serious is scleroderma?

It depends on what type of scleroderma you have. Scleroderma can be inconvenient at its best, and it can be life-threatening at its worst. Scleroderma is different for every person who has it, so it’s hard to predict who will get especially sick. Some blood tests (autoantibodies) can help predict who might have more severe symptoms.

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Written by:

Samantha C. Shapiro, MD

Samantha Shapiro, MD, is a board-certified rheumatologist and internist with expertise in autoimmune and inflammatory conditions. She founded the division of rheumatology at Dell Medical School at The University of Texas at Austin.

Edited by:

Karla Robinson, MD

Karla Robinson, MD, is a medical editor for GoodRx. She is a licensed, board-certified family physician with almost 20 years of experience in health through varied clinical, administrative, and educational roles.

Reviewed by:

Maria Robinson, MD, MBA

Maria Robinson, MD, MBA, is a board-certified dermatologist and dermatopathologist who has practiced dermatology and dermatopathology for over 10 years across private practice, academic, and telehealth settings. She is a fellow of the American Academy of Dermatology and the American Society of Dermatopathology.

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Images used with permission from VisualDx (www.visualdx.com).