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WHAT YOU SHOULD KNOW:
- Stevens-Johnson syndrome (SJS) is a serious condition of your skin and mucous membranes. SJS is usually caused by a medicine you are taking. SJS may also be caused by infection, vaccinations, or diseases involving your organs or whole body. The cause of SJS may be unknown, and your risk may be genetic (passed on by a parent). With SJS, you will lose your epidermis (outer layer of skin) on up to ten percent of your body. Sores may grow on your skin, genitals (area between your legs), in your mouth, eyes, and other organs. SJS can overlap with the disease toxic epidermal necrolysis (TEN). With SJS/TEN you will lose 10 to 30% of your epidermis.
- Your caregiver will stop medicines he thinks may be causing your sickness. Treatment may include medicines for pain, infection, and to help heal your sores. You may need an IV for medicines, and to put fluids and liquid nutrition into your body. You may need blood tests or x-rays, wound (SJS sores) care, and maybe surgery to help you heal. A therapist may exercise your arms and legs if you have to stay in bed. If sores are in your throat and lungs, you may be on a ventilator to help you breath.
- 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, genital skin problems, and difficulty urinating. You may also be seen by special caregivers to help with lifelong skin, eye, and medical problems. With SJS, you may die. Death is usually caused by infection, lung problems, or other serious problems.
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him 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.
- Over-the-counter medicine: Over-the-counter (OTC) medicines are the kind that you can buy without an order (prescription) from a caregiver. OTC medicine may be used for many reasons, such as decreasing pain or a high body temperature (fever). These medicines are safe for most people to use and can help you feel better when used correctly. However, they can cause serious problems when they are not used correctly. People using certain other medicines or that have certain medical conditions are at a higher risk for problems. Using too much, or using these medicines for longer than the label says can also cause problems. Follow directions on the label carefully. If you have questions, talk to your caregiver.
- Pain medicine: You may need medicine to take away or decrease pain.
- Learn how to take your medicine. Ask what medicine and how much you should take. Be sure you know how, when, and how often to take it.
- Do not wait until the pain is severe before you take your medicine. Tell caregivers if your pain does not decrease.
- Pain medicine can make you dizzy or sleepy. Prevent falls by calling someone when you get out of bed or if you need help.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
Men 19 years old and older should drink about three Liters of liquid each day (about 13 eight-ounce cups). Women 19 years old and older should drink about two Liters of liquid each day (about 9 eight-ounce cups). If you are used to drinking liquids that contain caffeine, such as coffee, these can also be counted in your daily liquid amount. Drink even more liquids if you will be outdoors in the sun for a long time. You should also drink more liquids if you are exercising. Try to drink enough liquid each day, and not just when you feel thirsty. The best liquids to drink have water, sugar, and salt in them. These liquids help your body hold in fluid and help prevent dehydration. Ask your caregiver what liquids are best to drink if you are on a low salt or low sugar diet.
- Ask your caregiver about the right way to change your bandages at home. It is important to know how often your bandages need to be changed. If someone will be helping you, they should hear the caregiver's instructions with you.
- 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 sponge to use. Your caregiver may also order a special mouthwash for rinsing your mouth.
- Use baby shampoo to clean skin areas with hair on them.
- You may feel like resting more. Slowly start to do more each day. Rest when you feel it is needed.
Changes in how you look:
- After your skin has healed, you may have changes in your skin color.
- Lifelong hair loss may happen after having SJS. This may include hair from your head, eyelashes, eyebrows, and other areas of your body.
- You may have scars on your body from the SJS sores. You may also have scars from your skin loss.
- You may have lifelong vision problems from SJS sores in your eyes.
- You may lose your fingernails and toenails.
CONTACT A CAREGIVER IF:
- You have a fever.
- You have questions or concerns about your illness or care.
SEEK CARE IMMEDIATELY IF:
- You feel very dizzy or you faint.
- You have new changes in your vision, or 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.
Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.