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What Is Stevens-Johnson Syndrome? Causes & Warnings

What is Stevens-Johnson Syndrome—and how can it cost you your sight? Discover the causes, warning signs, and urgent treatments for this rare but life-threatening medical emergency.

Stevens-Johnson Syndrome (SJS) is a rare, life-threatening skin disorder that damages the skin and mucous membranes, including the eyes. Typically triggered by severe medication reactions or infections, SJS demands urgent medical care. Without prompt treatment, it risks permanent vision loss or blindness.

Doctor examines a male patient with visible facial rash and swelling caused by Stevens-Johnson Syndrome in a clinical setting.

Key Takeaways:

  • Stevens-Johnson Syndrome (SJS) is a medical emergency that can rapidly escalate from flu-like symptoms to severe skin and eye damage — early recognition is vital.

  • Medications are the top trigger, with antibiotics, NSAIDs, anticonvulsants, and gout treatments being common offenders.

  • Eye involvement is often serious and permanent, including corneal ulcers, dry eye, and eyelid damage that can lead to blindness.

  • Hospitalization in a burn or ICU unit is critical for managing fluid loss, pain, skin wounds, and mucosal damage.

  • Avoid known triggers and inform all healthcare providers of past adverse drug reactions to lower future risks.

  • Genetic testing can save lives, especially for at-risk individuals before starting high-risk medications.

  • Seek emergency care immediately if you notice skin peeling, painful eye symptoms, or a rash after starting a new medication.

 

SJS triggers fall into three key categories:

medications, infections, and genetic/immune risks.

1. Medications

Common culprits include:

  • Antibiotics (e.g., sulfonamides, penicillins)

  • NSAIDs like ibuprofen or naproxen

  • Anticonvulsants (for epilepsy/mental health)

  • Allopurinol (gout treatment)
    Why? These can spark abnormal immune reactions, causing skin/mucous membrane inflammation.

2. Infections

Pneumonia, herpes, or Mycoplasma pneumonia (bacterial lung infection) may activate SJS.

3. Genetic & Immune Risks

  • Genetic markers: Increase susceptibility to medication-triggered SJS.

  • Weakened immunity: HIV, cancer, or immunosuppressive illnesses heighten risk.

Symptoms of Stevens-Johnson Syndrome

SJS typically starts with flu-like signs before progressing to severe skin reactions. Key symptoms include:

Early Warning Signs (1-3 days before rash):

  • High fever

  • Sore throat and cough

  • Fatigue and body aches

Advanced Skin & Mucous Membrane Issues:

  • Painful rash: Red/purple patches that blister and spread

  • Skin peeling: Top layer shedding (resembling severe burns)

  • Mucosal sores: Painful ulcers in the mouth, eyes, or genitals, complicating basic functions like swallowing or urination

  • Ocular inflammation: Red, swollen eyes (potentially leading to vision loss)

Due to its burn-like skin damage, SJS patients often require specialized care in hospital burn units.

How Stevens-Johnson Syndrome Affects Vision

SJS frequently causes severe, sometimes permanent eye damage. Key ocular complications include:

  • Initial inflammation: Red, swollen eyes that rapidly deteriorate

  • Chronic dry eye: Tear gland damage reduces lubrication, causing persistent dryness

  • Corneal ulcers/scarring: Open sores or scarring on the cornea (leading cause of SJS-related blindness)

  • Light sensitivity (photophobia): Painful reaction to bright light due to surface damage

  • Conjunctival adhesions (symblepharon): Eyelids fuse to the eyeball, limiting movement

  • Eyelid problems: Misalignment or inward-growing lashes (trichiasis) that scratch the cornea

Without aggressive treatment, these issues can result in permanent vision loss or blindness.

Stevens-Johnson Syndrome demands emergency hospitalization due to its life-threatening nature.

Critical treatment steps include:

1. Eliminate Triggers

  • Immediately halt any medication suspected of causing SJS.

2. Hospital-Based Care

  • Admission to ICU or specialized burn units

  • IV fluids to combat dehydration

  • Aggressive pain control

  • Advanced wound care (similar to burn treatment)

3. Mucosal Repair

  • Medicated eye drops/antibiotics for ocular damage

  • Oral numbing solutions for painful mouth ulcers

4. Inflammation Control

Potential SJS Complications

Severe skin and internal tissue damage from SJS may lead to:

  • Sepsis: Life-threatening bloodstream infection

  • Organ failure: Liver, kidney, or lung damage

  • Vision loss: Permanent blindness in unresolved cases

  • Skin complications: Chronic scarring and sensitivity

Can You Prevent Stevens-Johnson Syndrome?

Though not always preventable, these strategies reduce SJS risk:

  • Avoid previous triggers: Never re-use medications that caused past reactions

  • Genetic screening: Test for HLA-B*1502/other markers if SJS runs in your family (critical before high-risk drugs)

  • Medical history transparency: Always inform healthcare providers about prior medication reactions

SJS is a vision-threatening emergency requiring urgent care.

If you experience:

  • Red/painful eyes + light sensitivity

  • Blurry vision with flu-like symptoms

  • Skin rashes or mouth sores.

Stevens-Johnson Syndrome is rare but dangerously fast-moving—often striking without warning. Recognizing early symptoms and acting quickly can save your vision and your life.

If you or a loved one experience unusual rashes, painful eyes, or flu-like symptoms after starting a new medication, don’t wait—
Seek emergency medical care immediately.

Stay informed. Share this guide to help others recognize the signs of SJS before it’s too late.

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