Stevens-johnson Syndrome

What is Stevens-Johnson syndrome?

  • Stevens-Johnson syndrome (SJS) is a rare and serious condition of your skin and mucous membranes. Mucous membranes include the lining of your mouth, bowels, eyes, and nose. With SJS, you will lose your epidermis (outer layer of skin). Skin is lost on up to ten percent of your body. SJS can also overlap with the disease toxic epidermal necrolysis (TEN). In SJS/TEN, you will lose between 10 to 30% of your outer layer of skin.

  • With SJS your skin may heal with or without scars. Healed skin may have pigment (color) changes. You may lose your nails and hair for your lifetime. You may have lifelong problems swallowing, and difficulty urinating. SJS may also cause you to have lifelong skin, vision, and medical problems. With SJS, you may die. Death is usually caused by infection, lung problems, or other serious problems.

What causes Stevens-Johnson syndrome?

SJS is usually caused by a response to a medicine you have been taking. The response may happen within one week to two months of taking the medicine. SJS may also be caused by infection, vaccinations, or diseases involving your organs or whole body. The cause of SJS may be unknown, and SJS risk may be genetic (passed on by a parent). The most common medicines that may cause SJS are:

  • Antibiotics (used to treat infection).

  • Anti-seizure medicines (used to treat convulsions).

  • Non-steroidal anti-inflammatory (NSAIDs) medicine (used to treat swelling or fever).

What are the signs and symptoms of Stevens-Johnson syndrome?

Up to two weeks before SJS sores appear on your mouth and skin, you may have the following symptoms:

  • Cough.

  • Fatigue (sleepiness).

  • Fever and chills.

  • Headache.

  • Muscle and joint pain.

  • Sore throat.
SJS makes the outer layer of your skin die and fall off. Sores grow on your body that look like targets. The target sores will have three rings that may be different colors of pink or red. Painful sores will usually grow in your mouth first, and may make it hard to swallow and breathe. Sores and blisters then spread to your skin, and may be very painful and feel like burning. You may have blisters and sores in your eyes and genitals (area between your legs). You may also have sores in your stomach, lungs, and colon (bowel). When your skin dies and falls off, it will be dark red and look badly burned.

How is Stevens-Johnson syndrome diagnosed?

Caregivers will usually know you have SJS by looking at you. Caregivers will want to know if you have felt sick, and if you have been using any medicines. By asking this, they may be able to figure out what is causing your skin problem. Your caregiver may biopsy an area of your skin to be sure it is SJS. For a biopsy, your caregiver will take a sample of your skin for testing. Your caregiver may also do other testing, such as blood tests and x-rays.

How is Stevens-Johnson syndrome treated?

The goal of treating SJS is to stop symptoms from getting worse and protect you from getting sicker. You are put in the hospital to treat SJS. Your caregiver will stop the medicine you were taking that caused the response. If your caregiver cannot learn what made you sick, he may stop all your medicines. You will need an IV put in your vein that connects to tubing, for getting medicine and liquids. You may also be given liquid nutrition (TPN) through your IV because of protein loss. Wound (SJS sores) care will be done by your caregivers to help stop any infection from starting. You may also need any of the following :

  • Medicines commonly used:

    • Antacids: With SJS, sores may grow in your stomach and intestinal tract and bleed. This medicine may help lower your chance of getting this kind of bleed.

    • Antibiotics: Antibiotics may be given to help treat an infection (caused by germs called bacteria) in your blood. Your caregiver may also put medicine on your skin to lower your chance of infection. This medicine is a topical antibiotic or antiseptic.

    • Blood thinners: This medicine helps stop clots from forming in your blood. This may be needed if you are not able to get out of bed for a long time.

    • Eye drops: Eye drops may be used if you have sores in your eyes. This may help your eyes to heal, and stop infection from starting.

    • Immune globulins: This medicine is given as a shot or an IV infusion to make your immune system stronger. You may need immune globulins to treat or prevent an infection. It is also used when you have a chronic condition, such as lupus or arthritis. You may need many weeks of treatment. Each infusion can take from 2 to 5 hours.

    • Pain medicines: Caregivers may give you medicine to take away or decrease your pain.

    • Pressors: This kind of medicine may be given to increase your blood pressure. Keeping your blood pressure in normal range protects your heart, lungs, brain, kidneys, and other organs.

  • Hydrotherapy: This therapy is done in a whirlpool. Hydrotherapy may help to clean your wounds, and remove dead tissue from your skin.

  • Physical therapy: A physical therapist may do special exercises with you. This will help your arm and leg movement if you have to stay in bed.

  • Surgery: Surgery may be needed if your skin does not heal properly. You may need any or all of the following:

    • Debridement: This is done to clean and remove dirt, or dead tissues from the injured area.

    • Skin graft: A piece of skin is taken from one area of the body and attached to the injured area. A skin graft may help to heal your injury. Donor skin (from another person) may also be used.

  • TPN: TPN stands for total parenteral nutrition. It is also called hyperalimentation. It provides your body with nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you have problems with eating or digesting food. TPN is usually put into your body through a large IV. You may need TPN for several days or longer.

  • Wound care: Your caregivers may put special bandages on your sores to protect them, and help them heal.

What can I do to feel better when I have Stevens-Johnson syndrome?

  • Carefully follow your caregiver's instructions about any special diet.

  • Clean your mouth as shown by your caregiver. If you have mouth sores, your caregiver may give you a special tooth brush or swab to use. Your caregiver may also order you a special medicated mouth wash for rinsing your mouth.

  • Work with your therapist to keep your arms and legs moving. This will keep you from getting too stiff from being in bed. Rest when you feel it is needed.

  • Use baby shampoo to clean skin areas with hair on them.

What puts me at risk of having Stevens-Johnson syndrome?

Taking medicines such as antibiotics, anti-seizure, and NSAIDs, increases your risk of getting SJS. Women are at higher risk of getting SJS than men. SJS usually happens in people over forty, but can happen in all ages. SJS also happens more in people with a poor immune system. Your body's immune system works to fight infection. If you have HIV or AIDS, your risk of getting SJS is much higher.

When should I call my caregiver?

Call your caregiver if:

  • You have a fever.

  • You get a rash, or sores in your mouth after starting a new medicine.

  • Your skin is red and hurts.

When should I seek immediate help?

Call 911 or seek immediate help if:

  • You have a blistering rash on your skin, in your mouth, eyes, or genitals.

  • You suddenly have trouble breathing.

  • Your skin hurts and begins peeling off.

Where can I find support and more information?

Having SJS can be life changing for you and your family. Talk to your caregiver, family, and friends about your feelings. Contact the following for more information:

  • Stevens Johnson Syndrome Foundation and Support Group
    P.O. Box 350333
    Westminster , CO 80035-0333
    Web Address:

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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