What Is Stevens-Johnson Syndrome? Symptoms, Rash Images, Causes, and Treatment

Stevens-Johnson syndrome (SJS) is a rare but serious skin condition. The most common cause is a reaction to a medication. SJS causes the skin to get inflamed, blister, and peel. The blistering can cover large parts of the body. If more than 30% of the body is affected, it’s called toxic epidermal necrolysis (TEN). 

Even though the skin symptoms are most noticeable, SJS can also cause dangerous inflammation in other organs. And the blistering puts people at risk for serious complications, like dehydration and infection. So SJS is a medical emergency that needs prompt diagnosis and  treatment to prevent long-term harm. 

What are the symptoms of Stevens-Johnson syndrome?

SJS typically develops within 1 to 3 weeks after starting a medication. It can also start after someone has stopped taking a certain medication (usually within 2 weeks). 

Early signs of SJS 

It starts with flu-like symptoms, such as:

• Sore throat

• Fever

• Fatigue

• Body aches

• Cough

These are the earliest signs of SJS. In this stage, most people aren’t aware that their symptoms are from SJS. This is especially true because the symptoms are similar to what you may feel at the start of a cold or the flu. 

Other signs and symptoms

More than 90% of people with SJS will also have mucosal involvement, which means that the mucus membranes are affected. The eyes are the most commonly affected, but the genitals, airway, and throat can all be affected as well. Symptoms include: 

• Burning or stinging in the eyes

• Eye discharge or crusting

• Sensitivity to light 

• Pain with urination (peeing) 

• Shortness of breath

• Sores or blisters inside the mouth

• Difficulty swallowing

SJS rash

The SJS rash often starts 1 to 3 days after the other symptoms. And as the rash evolves, it can change in appearance and location from day to day. Here’s the common progression of the SJS rash:

• It typically first appears on the upper chest, face, and the hands and feet. 

• When it first starts, the rash looks like red, purple, or brown spots of different sizes.  

• The spots then become darker in the middle and lighter around the edges. These are sometimes called “target” lesions because they look like a bull’s-eye. 

• Within hours to days, it starts to spread to other parts of the body. Most often it spreads to the abdomen, arms, and legs. 

• As it spreads, the red spots join together and form fluid-filled blisters. 

• The blisters eventually burst and the skin begins to peel. This exposes large areas of skin and creates a risk of infection. 

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The rash can be very painful, especially when the skin starts to blister and heal. When this happens, it can also lead to dehydration and skin infections. 

Here are some pictures of the SJS rash to help you know what it looks like. 

A person with Stevens-Johnson syndrome (SJS) has numerous red patches on their legs.

The early stages of the SJS rash can be more subtle in darker skin.

The SJS rash appears on a person’s palm and wrist, with “target” lesions.

The blisters of the SJS rash have burst, and some of the skin is peeling.

What causes Stevens-Johnson syndrome?

The most common cause of SJS is a reaction to a medication that someone has taken. But other causes (like infections) are also possible. Here’s an overview of the different causes of SJS. 

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Medications that can cause SJS

More than 100 medications can cause SJS. Most often these include:

• Sulfa medications: zonisamide, cotrimoxazole, sulfasalazine

• Antibiotics: ampicillin, amoxicillin, cephalosporins, fluoroquinolones

• Anti-seizure medications: carbamazepine, lamotrigine, phenobarbital, phenytoin

• Allopurinol: a medication that treats gout and kidney stones

• Pain relievers: nonsteroidal anti-inflammatory drugs (NSAIDs), like diclofenac and ibuprofen (Advil, Motrin), and acetaminophen (Tylenol)

• Teriflunomide: a medication that treats multiple sclerosis

Here’s a more complete list of the different medications that have been connected to cases of SJS.

Infections that can cause SJS

A less common cause of SJS is an actual infection. Examples of infections that can do this are: 

• Mycoplasma pneumonia: Another name for this pneumonia is “walking pneumonia,” because it doesn’t cause severe symptoms. It’s more commonly associated with SJS in children and teens.

• Cytomegalovirus (CMV): This common virus can affect people of any age. It generally doesn’t cause any symptoms unless a baby is born with it.

• Human immunodeficiency virus (HIV): This virus attacks the body’s immune system.

• Herpes simplex virus (HSV): This virus often causes sores on the mouth or genitals.

• Epstein-Barr virus (EBV): This virus commonly spreads through saliva. It often leads to infectious mononucleosis, or the “kissing disease.”

• Influenza virus: This common infection affects the nose, throat, and lungs.

• Coxsackievirus: This virus causes a rash in children, often on their hands, feet, and in their mouth, hence its popular name, hand, foot, and mouth disease. In adults, it can cause symptoms like the common cold.

Less common causes of SJS

SJS might occur for other reasons, too. There have been a few cases of people developing SJS after receiving a vaccination. But these reports are rare, and it isn’t clear if the vaccine itself led to SJS.

Other rare causes of SJS include graft-versus-host disease, a condition that can develop after a bone marrow or organ transplant. And sometimes SJS develops for no known reason.

Diagnosis for Stevens-Johnson syndrome

A healthcare professional can often diagnose SJS just by looking at your skin and reviewing your symptoms. The appearance of the rash and the way it spreads is pretty characteristic to SJS.  

To confirm the diagnosis, a healthcare professional can do a skin biopsy. They’ll take a sample of skin and look at it under a microscope.

Treatment for Stevens-Johnson syndrome

SJS can be life-threatening when the blistering leads to some of the complications we discussed above. So early recognition and treatment are important. 

Treatment for SJS is best in the hospital because SJS creates a risk of dehydration and infection. Severe cases may need treatment in a burn unit because they’re equipped to handle skin peeling and wound care.

Since a medication reaction causes most cases of SJS, the most important first step in treating SJS is stopping that medication. 

A key part of treatment for SJS is supportive and specialized medical care. This includes:

• Intravenous (IV) fluids to maintain hydration

• Daily wound care with nonadhesive dressings

• Pain relief medications

• High-calorie food to promote healing

• Specialized eye care if SJS affects the eyes or eyelids

• Antibiotics in the case of skin infection

Some cases need additional treatments. The decision depends on the severity of SJS and if the underlying cause is unknown. These treatments may include:

• Cyclosporine: Cyclosporine may decrease how long SJS lasts.

• Plasmapheresis: This can help remove parts of the harmful medication from the blood.

• TNF blockers: Tumor necrosis factor (TNF)-alpha inhibitors can decrease inflammation.

• Steroids: Corticosteroids may improve outcomes if started early.

• Immunoglobulin infusion: Intravenous immunoglobulin (IVIG) can block the medications from harming the body.

And most importantly, if a medication is the likely cause of someone’s SJS, that person needs to avoid using that medication for the rest of their life.

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Written by:

Cherilyn Davis, MD

Cherilyn Davis, MD, is a board-certified pediatrician in NYC. She's held local and national roles at the American Medical Women's Association, including board member of the physician division and physician chair of social media.

Edited by:

Sophie Vergnaud, MD

Sophie Vergnaud, MD, is the Senior Medical Director for GoodRx Health. A pulmonologist and hospitalist, she practiced and taught clinical medicine at hospitals in London for a decade before entering a career in health education and technology.

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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