17656 Stevens Johnson Syndrome

Overview

Stevens-Johnson Syndrome, often called SJS, is a rare but very serious condition where the skin and the moist linings of the body, like the mouth and eyes, become damaged and start to blister and peel. It is usually a reaction to a medicine or an infection.

No, it is very rare. Most doctors will see only a handful of cases in their entire career.

Anyone can get SJS, but it is slightly more common in adults. Some people have gene changes that make them more likely to react this way to a medicine.

Symptoms

Common symptoms

• Flu-like symptoms such as fever, sore throat, and tiredness for a few days
• A painful red or purple rash that starts on the chest and spreads
• Blisters that break open, leaving raw skin
• Skin that hurts or feels like it is burning
• Sores in the mouth, nose, eyes, or private areas

Symptoms in children

• Fever and fussiness
• Refusing to eat or drink due to mouth pain
• Red eyes or a rash with blisters
• Tiredness and being less active than usual

Symptoms in older adults

• Skin may be thinner, so damage can happen faster
• Higher risk of dehydration because fluid is lost through raw skin
• Confusion or drowsiness can be an early sign
• Existing health conditions may make recovery harder

Causes

Main causes

• A reaction to certain medicines, such as some antibiotics, pain medicines, or medicines for seizures — but not everyone who takes these medicines will have this reaction.
• Infections, such as some viral or bacterial infections, can also trigger SJS.
• In a small number of cases, the trigger is unknown.

Risk factors

• Recent use of a medicine that has been linked to SJS
• A weakened immune system from an illness or another health condition
• A family history of SJS or related skin reactions
• Being of certain genetic backgrounds that make the reaction more likely

When to see a doctor

See a doctor urgently if:

• See a doctor urgently if you have a rash that starts to blister or peel, especially if you also have a fever.
• If you have mouth sores and a rash together, seek urgent medical care.
• If your eyes become red or painful along with a skin rash, go to urgent care.

Book a routine appointment if:

• If you have had SJS before, talk to a specialist before taking any new medicine.
• If you have questions about medicines that are safe for you after SJS, book a routine appointment with your doctor.

Diagnosis

A doctor will look at your skin and ask about your recent medicines, infections, and overall health. They may work with a skin specialist, called a dermatologist, to make the diagnosis.

Tests that may be done

• Blood tests to check for signs of inflammation or infection
• A skin biopsy, where a small piece of skin is removed and studied
• Fluid or swab tests from blisters to rule out infections

What to expect at your appointment

If a doctor suspects SJS, you will usually be admitted to the hospital, often in a specialist unit. The medical team will monitor you closely and help manage your symptoms while tests are done.

Treatment

Treatment for SJS happens in the hospital. The most important step is to stop the medication or treat the infection that likely caused the condition. Then the team focuses on supportive care to help your skin heal and prevent complications.

Self-care at home

• Follow your care team's instructions for cleaning and covering your skin.
• Drink fluids as advised, but do not force yourself if you have mouth pain.
• Use pain relief and eye drops exactly as prescribed by your doctor.
• Let your nurses know right away if you feel new pain or symptoms.

Medical treatments

Medical treatment may include IV fluids to prevent dehydration, medicines to control pain, dressings and wound care, and treatments to reduce inflammation. In severe cases, other therapies may be used, but your care team will explain the options suited to your condition. It is important not to take any medicine, even over-the-counter ones, without asking your doctor.

When is surgery considered?

In very severe cases, surgery such as skin grafting may be needed to cover areas of raw skin. This is unusual and only done when the damage is extensive.

Living with this condition

Recovery from SJS can take weeks or even months. During this time, you may need help with daily tasks like dressing, eating, and moving around. Your health care team will set up follow-up appointments to monitor your skin, eyes, and general health.

Lifestyle tips

• Avoid the medicine or trigger that caused your reaction, and tell all your health care providers so they do not prescribe it.
• Wear sunscreen and protective clothing because your skin may be more sensitive to the sun after SJS.
• Keep your skin moisturized with gentle, unscented products approved by your care team.
• Take extra care with your mouth and eyes — your specialist may give you specific advice.

Diet and exercise

Eat a balanced diet with soft, bland foods if your mouth is sore. High-protein foods can help your skin heal. Exercise should be gentle and only resumed when your skin has healed enough — ask your doctor what is safe for you.

Mental health and emotional wellbeing

SJS can be frightening and life-changing. It is normal to feel anxious, upset, or stressed during recovery. You do not have to manage these feelings alone — talk to your doctor about counseling or mental health support.

Prevention

You cannot always prevent SJS because it is an unpredictable reaction. However, if you have had SJS, avoiding the medicine that triggered it is essential. Always check with your doctor before starting any new medicine, and ask whether it is safe for you.

Vaccines

If you have had SJS, ask your doctor before getting any vaccine. Vaccines are generally safe, but your doctor will consider your history and guide you.

Complications

If left untreated

• Severe infections from bacteria entering raw skin
• Vision loss or long-term eye problems
• Scarring and changes in skin color
• Damage to internal organs such as the lungs, kidneys, or liver

Long-term outlook

With prompt hospital care, many people with SJS recover fully, although healing can take time. The earlier treatment begins, the better the chances of a full recovery. Your health care team will do everything they can to support you through each step.

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