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Stevens-Johnson Syndrome Discharge Instructions


About this topic


Stevens-Johnson syndrome is a serious skin disorder. It is caused by an allergic reaction caused by a drug. It is not preventable and is very rare. It appears as red patches and blisters all over the skin. The skin can peel off parts of the body. Most often they are on the legs, arms, palms, hands, feet, face, and inside your mouth. The eyes and genital area can also be affected. ‚  
Your skin is your first line of defense to germs. With this illness, infection can be a problem as the damaged skin cannot protect you. It may take your body 2 to 3 weeks to form new skin. ‚  
Signs of Stevens-Johnson syndrome may be: ‚  
  • Fever
  • Feeling sick and tired
  • Eye problems like sensitive to light or a lot of tears
  • Skin problems like pain; burning, red or purple rash; blisters on your skin, mouth, nose and eyes; sloughing or shedding of your skin
  • Pain when passing urine
  • Trouble breathing
  • Swelling of your face or tongue
  • Hard to eat or drink

Treatment for Stevens-Johnson syndrome will be given in the hospital. Treatment can be: ‚  
  • Stopping the drug that caused the problem
  • Preventing or treating an infection
  • Skin grafting if large areas of the body are affected

What care is needed at home?


  • Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do.
  • Take all your drugs as ordered by your doctor.
  • In some cases, water therapy may be used to help relieve the pain.
  • Change your bandages as ordered by the doctor.
  • Use a special toothbrush or sponge if you have mouth sores. Ask your doctor about it.
  • Avoid picking off the dead skin. Leave the blister alone.
  • Avoid using adhesive tapes on the skin.
  • Get enough rest.
  • Practice good hand washing.

If a skin graft was done: ‚  
  • Protect your skin graft from the sun.
  • Do not let your wound get soaked in water for 4 weeks after the surgery.
  • Talk to your doctor about how to care for your wound. Ask your doctor about:
    • When you should change your bandages
    • When you may take a bath or shower
    • If you need to be careful with lifting things over 10 pounds
    • When you may go back to your normal activities
  • Be sure to wash your hands before touching your wound or dressing.
  • Practice proper wound cleaning to prevent wound infection. Be sure not to pull on stitches or staples.
  • Check your wound for any changes.
  • You may need to rest up to 6 to 8 weeks after the surgery for the wound to fully heal.
  • Do not drive or run machines. Avoid tiring work.

What follow-up care is needed?


  • Your doctor will ask you to make visits to the office to check on your progress. Be sure to keep these visits.
  • Your doctor may ask you to see an eye doctor.

What drugs may be needed?


The doctor may order drugs to: ‚  
  • Control itching
  • Help with skin care
  • Help with pain
  • Treat infection
  • Reduce swelling and irritation
  • Moisten the eyes

Will physical activity be limited?


  • Physical activity may be limited due to loss of strength.
  • Physical therapy or PT may help you start to regain strength and get back to your normal life.

What changes to diet are needed?


  • Eat a healthy diet.
  • Drink 6 to 8 glasses of fluids each day.

What problems could happen?


  • Long-lasting skin damage and scarring
  • Dry eyes
  • Change in eyesight
  • Eyes or skin sensitive to sunlight
  • Long-term lung irritation, which can cause breathing problems

What can be done to prevent this health problem?


Wear an identification bracelet that says what drug caused the problem. Make sure to include that it caused Stevens-Johnson syndrome. ‚  

When do I need to call the doctor?


  • Signs of infection. These include a fever of 100.4 ‚ °F (38 ‚ °C) or higher, chills.
  • Signs of skin infection. These include swelling, redness, warmth around the skin; too much pain when touched; yellowish, greenish, or bloody discharge; foul smell coming from the skin; new area of skin opens up.
  • Trouble breathing
  • Health problem is not better or you are feeling worse

Teach Back: Helping You Understand


The Teach Back Method helps you understand the information we are giving you. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚  
  • I can tell you about my condition.
  • I can tell you how to care for my skin.
  • I can tell you what I will do if I have swelling, redness, or warmth around my wound.

Where can I learn more?


National Organization for Rare Diseases ‚  
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/295/viewAbstract ‚  

Consumer Information Use and Disclaimer


This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚  

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