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WHAT YOU NEED TO KNOW:
Stevens-Johnson syndrome (SJS) is a rare and serious condition of your skin and mucus membranes. SJS will cause you to lose up to 10% of your outer layer of skin. SJS is usually caused by a response to a medicine you have been taking. The most common medicines are antibiotics, NSAIDs, and antiseizure medicines. The response may happen 1 week to 2 months after you take the medicine. SJS may also be caused by infection, vaccinations, or diseases involving your organs or whole body.
- Pain medicine may be given. Do not wait until the pain is severe before you take your medicine.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Follow up with your healthcare provider as directed:
Write down your questions so you remember to ask them during your visits.
Alert others of your condition:
- Carry medical alert identification, such as jewelry or a card that says you have had SJS. In case of emergency, this will tell others which medicines have made you sick. Ask your healthcare provider where to get these items.
- Tell close relatives what caused your SJS. They may be at a higher risk for SJS from the same cause.
Adults should drink about 9 to 13 cups of liquid each day. One cup is 8 ounces. Good choices of liquids for most people include water, juice, and milk. Ask your healthcare provider how much liquid you should drink each day.
- Ask how to change your bandages. It is important to know how often your bandages need to be changed. If someone will be helping you, he should listen to the instructions with you.
- Clean your mouth as shown by your healthcare provider. If you have mouth sores, you may have been given a special toothbrush or swab to use. Follow instructions if you were given a medicated mouthwash for rinsing your mouth.
- Use baby shampoo to clean skin areas with hair on them.
- Go to physical therapy as directed. Work with your therapist to keep your arms and legs moving. This will help prevent stiffness from being in bed.
- Rest when you feel it is needed. Slowly start to do more each day.
Contact your healthcare provider if:
- You have a fever.
- You have questions or concerns about your condition or care.
Seek immediate care or call 911 if:
- You feel very dizzy, or you faint.
- You have new changes in your vision, or you suddenly have trouble seeing.
- You have new sores on your body.
- You have pain that is not helped by medicine, or is getting worse.
- You suddenly have trouble breathing.
- Your wound or bandage has pus or a bad smell.
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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.