Stevens-Johnson Syndrome

Stevens-Johnson syndrome, commonly called SJS, is a rare but serious disorder affecting the skin and mucous membranes. It is most often triggered by a reaction to medication, although infections and other factors can also be involved3.

SJS can begin with symptoms that resemble an ordinary illness — fever, fatigue, sore throat or burning eyes — before progressing to painful skin, rash, blistering and peeling. The mouth, eyes, nose, genitals and other mucous membranes can also be affected.

For people who survive SJS, leaving the hospital does not always mean the effects are over. Some experience lasting problems involving their eyes, skin, lungs or other parts of the body.

Stevens-Johnson syndrome and toxic epidermal necrolysis are medical emergencies that typically require hospitalization. If you or someone with you has symptoms that could indicate SJS/TEN — especially a spreading painful rash, blistering, or sores in the mouth or eyes — seek immediate medical care rather than waiting to see whether it improves. Nothing on this page should delay that.

If you or someone you love developed Stevens-Johnson syndrome or toxic epidermal necrolysis after taking a medication, CBW Law wants to hear what happened.

What is Stevens-Johnson syndrome?

Stevens-Johnson syndrome is a severe reaction involving the skin and mucous membranes. SJS and toxic epidermal necrolysis (TEN) are now generally considered different degrees of the same disease spectrum rather than completely separate conditions23.

SJS represents the less extensive end of that spectrum. TEN involves much more extensive skin detachment and is generally the more severe condition. Both can be life-threatening23.

The reaction damages and kills cells in the outer layer of the skin. As the condition progresses, skin may blister, separate and peel away, leaving extremely painful exposed areas.

The reaction can also severely affect mucous membranes, including those of the:

• Mouth
• Eyes
• Nose
• Airways
• Genitals
• Urinary tract

Because the skin serves as an important protective barrier for the body, extensive damage can lead to serious complications involving fluid loss, infection and other organs2.

SJS can begin like an ordinary illness

One of the frightening characteristics of Stevens-Johnson syndrome is that its earliest symptoms may appear before the severe skin reaction becomes obvious.

Early symptoms can include:

• Fever
• Fatigue
• Sore mouth or throat
• Burning or irritated eyes
• Flu-like symptoms

The condition may then progress to symptoms such as:

• Unexplained widespread skin pain
• A spreading red or purple rash
• Blisters
• Painful sores
• Blistering of the mouth, eyes or genitals
• Peeling or shedding skin

Symptoms and severity vary from person to person.

Stevens-Johnson syndrome is a medical emergency. Anyone experiencing symptoms that could indicate SJS/TEN should seek immediate medical care.

What causes Stevens-Johnson syndrome?

Medications are among the most common triggers of SJS/TEN3.

A reaction can occur after a medication has been started, and identifying the responsible medication can sometimes be difficult — particularly when a patient takes several medications or has also recently had an infection.

Medication groups that have been associated with SJS/TEN include certain:

• Anti-seizure medications
• Antibiotics, including sulfonamide antibiotics
• Medications used to treat gout
• Antiretroviral medications
• Nonsteroidal anti-inflammatory drugs
• Pain and fever medications

This does not mean that everyone taking one of these medications will develop SJS. The condition is rare, and an individual reaction can depend on multiple factors — including genetic variations that researchers have associated with a higher risk of reacting to particular drugs3.

Infections can also trigger SJS/TEN — Mycoplasma pneumoniae and cytomegalovirus are among those described in the literature — and in some cases a definitive trigger is never identified3.

Medications associated with SJS/TEN

Medical literature and drug safety information have identified a number of medications associated with SJS/TEN. Examples include:

Anti-seizure medications

Certain anticonvulsant medications have well-established associations with serious skin reactions. Examples include lamotrigine, carbamazepine and phenytoin3.

Allopurinol

Allopurinol, a medication commonly used to treat gout and certain conditions involving elevated uric acid, is among the medications frequently associated with SJS/TEN3.

Sulfonamide antibiotics

Sulfonamide or “sulfa” antibiotics have long been recognized as potential triggers of severe cutaneous reactions including SJS/TEN23.

Certain pain relievers

Serious skin reactions have also been associated with some pain and fever medications.

The FDA has specifically warned that acetaminophen has been associated with rare but serious skin reactions including SJS and TEN. In August 2013 the agency required that a warning be added to the labeling of prescription medicines containing acetaminophen, and said it would work with manufacturers of over-the-counter acetaminophen products on the same information1. NSAIDs such as ibuprofen and naproxen also carry warnings concerning serious skin reactions.

Other medications

Other prescription medications have also been associated with SJS/TEN, including antiretroviral medications such as nevirapine and the oxicam class of anti-inflammatory drugs3.

Because many different medications can be involved, a person’s complete medication history can be important when doctors investigate what triggered the reaction.

SJS and TEN: understanding the difference

Stevens-Johnson syndrome and toxic epidermal necrolysis exist along the same disease spectrum. The terminology describes the extent of skin involvement, which clinicians measure as a percentage of the body’s surface area.

How the spectrum is classified

Stevens-Johnson syndrome — SJS

The less extensive form of the condition, involving a smaller percentage of the body’s skin surface — in the standard classification, detachment of less than 10% of the body surface area2.

SJS/TEN overlap

Some patients fall between the traditional definitions and may be diagnosed with SJS/TEN overlap, where detachment involves between 10% and 30% of the body surface area2.

Toxic epidermal necrolysis — TEN

The most extensive form, involving detachment of more than 30% of the body’s surface area2.

Both SJS and TEN are serious medical conditions. These are the classifications used in the medical literature, not a diagnosis — where a particular case falls is a question for the clinicians who examined and treated the patient.

What can happen during an SJS/TEN emergency?

No two cases follow the same course, but the sequence people describe to us tends to look something like this.

How an SJS/TEN emergency often unfolds

1. A medication or other trigger

   A patient takes a medication or encounters another potential trigger.

2. Early symptoms

   Fever, fatigue, sore throat, burning eyes or other flu-like symptoms may develop.

3. Skin and mucous-membrane reaction

   Painful skin, rash, blisters or sores begin to appear. The mouth, eyes and other mucous membranes may become involved.

4. Blistering and skin detachment

   Affected skin can blister, die and begin separating from the body.

5. Hospitalization

   Patients with SJS/TEN generally require hospital treatment. Severe cases may require intensive-care or burn-unit-level care2.

6. Recovery and follow-up

   Skin can begin healing, but recovery may take weeks or months. Some patients experience lasting complications requiring continued medical care.

Hospital treatment can be extensive

Treatment for SJS/TEN generally requires hospitalization and focuses on stopping the suspected trigger and supporting the body while damaged skin and mucous membranes heal2.

Depending on the patient’s condition, care can involve:

• Intensive-care treatment
• Burn-unit treatment
• Intravenous fluids
• Nutritional support
• Pain management
• Wound care
• Infection monitoring
• Eye care
• Respiratory care
• Dermatology
• Ophthalmology
• Other specialty care

When medication is suspected, physicians also review current and recently discontinued medications to identify possible triggers.

The exact treatment depends on the patient’s condition and should be determined by the treating medical team. Nothing here is a treatment recommendation.

The eyes can be seriously affected

SJS/TEN does not affect only the skin.

Eye involvement can be a particularly serious complication. The reaction can cause inflammation and damage involving the tissues around the eye and the cornea.

Possible complications include:

• Severe eye irritation
• Redness
• Dry eye
• Light sensitivity
• Corneal damage
• Scarring
• Visual impairment
• In severe cases, blindness

Patients with significant eye involvement may require treatment and long-term follow-up from an ophthalmologist.

Other potential complications

The loss of the skin’s protective barrier and involvement of mucous membranes can result in serious complications. These can include:

• Dehydration
• Infection
• Sepsis
• Pneumonia
• Respiratory problems
• Organ complications
• Skin scarring
• Changes in skin pigmentation
• Hair loss
• Nail abnormalities
• Chronic eye problems
• Genital or urinary complications

Severe SJS/TEN can be fatal. Survivors may continue dealing with medical consequences long after the initial hospitalization.

When a medication may have triggered the reaction

Determining what happened often requires looking backward.

A patient may have started a new medication before becoming ill. Another medication may have recently been increased or changed. The patient may have taken several prescription and over-the-counter products at the same time.

Doctors evaluating SJS/TEN frequently review both current and recently discontinued medications when attempting to identify a trigger.

Information that can help reconstruct that history includes:

• Medication names
• Prescription records
• Pharmacy records
• Prescription dates
• Dosage information
• Changes in dosage
• Recently discontinued medications
• Over-the-counter medications
• Emergency-room records
• Hospital admission records
• Records describing when symptoms first appeared

You don’t need to know which medication caused the reaction before contacting CBW Law. Tell us what you remember.

When a child develops SJS/TEN

Stevens-Johnson syndrome can affect children as well as adults.

For a parent, watching what initially appears to be an illness or medication reaction progress into a medical emergency can be terrifying.

A child’s treatment may involve hospitalization and multiple medical specialists. Depending on the severity and areas affected, follow-up care can continue after the child leaves the hospital.

If your child experienced SJS/TEN, tell us what happened — including the medications your child was taking, why they were prescribed, when symptoms began and what happened during the hospitalization. You do not need to determine the cause yourself before calling.

How these cases are handled

This is one of the places where SJS/TEN differs from most of the drug cases on this site, and it is worth being straightforward about it.

There is no multidistrict litigation for Stevens-Johnson syndrome or toxic epidermal necrolysis. The federal panel that consolidates mass drug cases before a single judge does not list an SJS or TEN proceeding among its pending dockets4. That is because these cases do not share one product — a lamotrigine case, a sulfa case and an acetaminophen case have almost nothing in common except the injury. So they are filed individually, in state or federal court, and each one rises or falls on its own medication, its own labeling and its own medical record.

Which company can be sued often turns on whether the medication dispensed was the brand or the generic. The Supreme Court has held that federal law preempts state-law failure-to-warn claims against generic manufacturers, because a generic maker cannot unilaterally change a label that federal law requires to match the brand5, and it later held that design-defect claims against a generic manufacturer are preempted for essentially the same reason — in a case brought by a woman who developed toxic epidermal necrolysis after taking generic sulindac6. Claims against the brand-name manufacturer are not subject to those two holdings.

Claims about over-the-counter medicines have been litigated to verdict. In Reckis v. Johnson & Johnson, the Massachusetts Supreme Judicial Court in 2015 affirmed a failure-to-warn verdict for a child who developed toxic epidermal necrolysis after doses of children’s ibuprofen, where the label warned of hives, facial swelling, asthma and rash but did not name the reactions themselves7. Federal regulators have continued to work on that labeling question, and in June 2024 the FDA published a proposed administrative order addressing labeling for certain over-the-counter internal analgesic products; the comment period closed that July, and no final order has followed8.

None of that tells you what your own case is worth, and this page is not going to guess. It tells you what the first questions are: which medication, brand or generic, who prescribed or recommended it, and what the label said at the time.

Medical records that can help tell the story

SJS/TEN can involve many different healthcare providers, which means important information may be spread across multiple sets of records. Potentially relevant records include:

• Prescription records
• Pharmacy records
• Primary-care records
• Emergency-room records
• Hospital records
• Intensive-care records
• Burn-unit records
• Dermatology records
• Ophthalmology records
• Skin-biopsy and pathology reports
• Photographs documenting the reaction
• Medication administration records
• Discharge summaries
• Follow-up treatment records

Pharmacy records can be particularly useful when someone does not remember the exact medication name or when it was prescribed — and they are also where the brand-or-generic question is usually answered.

You do not need to gather every record before contacting us. Much of it can be requested on your behalf once we know where to look.

Health insurance and continuing care

Recovery from SJS/TEN can involve medical care extending beyond the initial hospitalization.

Depending on the injuries and complications, a patient may require continued treatment from dermatologists, ophthalmologists, primary-care physicians and other specialists.

Health insurance coverage for specialists, medications, procedures and follow-up treatment varies by plan. Questions about specific benefits, provider networks, deductibles or authorization requirements should be directed to the insurer, healthcare provider or plan administrator. What is worth doing in the meantime is keeping the paperwork — the bills, the statements, the denial letters — because it documents the course of treatment as well as the cost of it.

A prescription shouldn’t leave you fighting to recover your life

Most people take medication because they’re trying to get better.

They don’t expect a prescription or over-the-counter medicine to be followed by painful blistering, peeling skin, an emergency-room visit or weeks in a hospital.

And when the immediate crisis is over, some SJS/TEN survivors are left dealing with consequences that continue much longer — changes to their skin, problems with their eyes, ongoing medical treatment and memories of an experience they never expected.

At CBW Law, we want to hear what happened. Tell us what medication you were taking, why you were taking it, what symptoms appeared and what happened next. If you don’t remember every medication or every date, that’s okay. Start with what you know.

We listen. We investigate. We order the records. And when the facts support a claim, we say so plainly — and when they don’t, we say that too.

Plain English

Medical, Health & Insurance

A claim like this arrives wrapped in two vocabularies, neither of them yours: the clinical language in the hospital chart, and the coverage language in the letters from the health plan. Here is what some of the terms you may encounter mean, so the paperwork is readable before it becomes decisive.

The condition

Stevens-Johnson syndrome (SJS)

A rare, serious disorder involving the skin and mucous membranes, most often associated with a medication reaction3.

Toxic epidermal necrolysis (TEN)

The more extensive end of the SJS/TEN disease spectrum, involving widespread skin detachment2.

SJS/TEN overlap

A term used when the extent of skin detachment falls between the traditional classifications of SJS and TEN2.

Cutaneous adverse drug reaction

An unwanted reaction to medication affecting the skin. SJS/TEN is among the most severe forms of drug-related skin reaction.

The body and the tests

Mucous membrane

The moist tissue lining areas including the mouth, eyes, nose, airways, genitals and urinary tract.

Epidermis

The outermost layer of the skin. The epidermal in toxic epidermal necrolysis refers to it.

Skin detachment

Separation and shedding of damaged outer skin. The percentage of body surface area involved is how SJS, overlap and TEN are distinguished2.

Skin biopsy

Removal of a small sample of skin for laboratory examination. A biopsy may be used as part of the diagnostic evaluation for SJS/TEN.

Sepsis

A life-threatening response to infection that can lead to organ dysfunction and other serious complications. It is one of the reasons extensive skin loss is dangerous.

The clinicians and the coverage

Dermatologist

A physician specializing in diseases affecting the skin.

Ophthalmologist

A physician specializing in diseases and injuries involving the eyes. SJS/TEN survivors with eye involvement are often followed by one for years.

Burn unit

A hospital unit equipped for extensive wound care. Severe SJS/TEN is sometimes treated there because the skin loss resembles a burn2.

Medication administration record

The hospital record of what drugs a patient was actually given, and when. In a suspected drug reaction it is often the most important single document.

Explanation of benefits

The statement a health plan sends after a claim is processed. It is not a bill; it is the plan’s account of what it paid, what it did not and why — which makes it worth keeping.

Prior authorization

A plan’s requirement that it approve a treatment, medication or referral before it will cover it. Denials can usually be appealed, and the appeal has a deadline of its own.

Educational only. These are plain-language summaries of words that turn up in charts, letters and bills — not clinical definitions, not a diagnosis and not advice about your treatment or your coverage.

Questions

Frequently asked Stevens-Johnson syndrome questions

The questions callers actually open with, answered the way we would answer them on the phone.

What is Stevens-Johnson syndrome?

Stevens-Johnson syndrome is a rare, serious disorder affecting the skin and mucous membranes. It is most often triggered by medications, although infections and other factors can also be involved3.

Is Stevens-Johnson syndrome the same as toxic epidermal necrolysis?

They are considered part of the same disease spectrum. SJS describes less extensive skin involvement, while TEN describes the most extensive form23.

In the standard classification the dividing lines are drawn by body surface area: under 10% is SJS, 10% to 30% is overlap, and more than 30% is TEN2.

Can medication cause Stevens-Johnson syndrome?

Yes. Medications are among the most common triggers of SJS/TEN3.

Which medications have been associated with SJS?

Many medications have been associated with SJS/TEN. Frequently recognized examples include certain anti-seizure medications — lamotrigine, carbamazepine and phenytoin — along with sulfonamide antibiotics, allopurinol and some pain medications3. Other drugs can also be involved.

Can over-the-counter medication be associated with SJS?

Yes. The FDA has warned of rare but serious skin reactions, including SJS and TEN, associated with acetaminophen1. NSAIDs including ibuprofen and naproxen also carry serious skin-reaction warnings.

How quickly does SJS develop?

Timing varies. Symptoms can develop after beginning a medication and may also occur after a medication has been discontinued. This is one reason doctors may review recently used medications when investigating a suspected case.

What are the early symptoms?

Early symptoms can resemble an infection and may include fever, fatigue, sore throat and burning eyes. A painful rash, blistering and skin peeling can follow.

Is SJS an emergency?

Yes. SJS/TEN is a medical emergency and generally requires hospitalization2. Someone currently experiencing symptoms that may indicate SJS/TEN should seek immediate medical care.

Can SJS cause permanent damage?

Yes. Some survivors experience lasting complications involving the eyes, skin, mucous membranes or other parts of the body.

Can Stevens-Johnson syndrome cause blindness?

Severe eye involvement can cause lasting visual impairment and, in some cases, blindness. Patients with significant eye involvement are often followed by an ophthalmologist long after discharge.

Can children develop SJS?

Yes. SJS/TEN can occur in children as well as adults.

Is there an SJS class action or settlement I can join?

No. There is no multidistrict litigation and no national settlement program for Stevens-Johnson syndrome or toxic epidermal necrolysis — the federal panel that consolidates mass drug cases does not list an SJS or TEN proceeding among its pending dockets4.

These claims are brought individually, and when they resolve they resolve one case at a time, often on confidential terms. Anyone telling you there is a settlement fund to sign up for is describing something that does not exist.

Does it matter whether I took the brand-name drug or the generic?

It can matter a great deal. The Supreme Court has held that federal law preempts state-law failure-to-warn claims against generic manufacturers5, and that design-defect claims against a generic manufacturer are preempted as well — in a case brought by a woman who developed toxic epidermal necrolysis after taking generic sulindac6.

That is one of the first things we try to establish from the pharmacy record. It does not necessarily end a case, but it changes who the case is against.

What if I don’t know which medication caused my reaction?

You don’t need to determine that yourself before contacting us. Pharmacy, prescription and medical records may help establish which medications were being taken before the reaction occurred.

What if several medications were being taken?

That can make identifying a suspected trigger more complicated. Doctors evaluating SJS/TEN commonly review a patient’s current and recently discontinued medications, and so do we.

What if my doctors never determined exactly what caused my SJS?

Tell us what happened anyway. Although medications are common triggers, infections and other factors can be involved, and in some cases a definitive trigger is never identified3.

Do I need all of my medical records before contacting CBW Law?

No. Tell us what happened and what you know. You don’t need to collect every medical or pharmacy record before starting the conversation.

This page is general information about Stevens-Johnson syndrome and toxic epidermal necrolysis and how claims involving them work. It is not legal advice, it is not medical advice, it does not create an attorney-client relationship, and it is not a prediction about any case. SJS/TEN is a medical emergency — decisions about diagnosis and treatment belong to the treating medical team. Whether a particular claim can be brought depends on facts and on the law of a particular state.