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Adult-Onset Still's Disease
WHAT YOU NEED TO KNOW:
What is adult-onset Still's disease (AOSD)?
AOSD is a rare type of arthritis. It is a severe form of a disease called juvenile idiopathic arthritis. AOSD is an autoinflammatory disease. This means your immune system makes too much inflammation and attacks its own healthy tissues, such as your joints and muscles.
What increases my risk for AOSD?
The cause of AOSD is not known. AOSD most commonly starts between 35 and 45 years of age. It is also more common in women than in men. A family history of rheumatoid arthritis may also increase your risk.
What are the signs and symptoms of AOSD?
- A high spiking fever (over 102°F or 38.9°C) every day at the same time
- Stiff, warm, and swollen joints, sometimes with red skin over the joints
- Hives, or a rash on your arms, legs, and trunk that is salmon colored with raised patches
- Severe throat pain, swollen glands, or pain in your abdomen
- Muscle pain or stiffness
- Feeling more tired than usual
- Loss of appetite, or weight loss without trying
How is AOSD diagnosed?
No test is available to check for AOSD. Other diseases and conditions need to be ruled out, such as an infection or tumor. Your healthcare provider will examine you and ask about your symptoms. Tell your provider if you have a family history of arthritis. Your provider may refer you to a rheumatologist (inflammatory disease specialist). Tests may show that you have rheumatoid arthritis. You may also need any of the following:
- Blood tests are used to check the amount of inflammation in your blood. The tests are also used to check your liver function. You may need blood drawn several times. This is because your provider will check for other diseases or conditions that may be causing your symptoms. Still's disease is diagnosed when tests show you do not have any other diseases or conditions.
- Ultrasound or CT scan pictures may be used to check for inflammation or to see if your organs are larger than normal.
- X-ray pictures may be taken to check for joint damage or inflammation.
How is AOSD treated?
AOSD cannot be cured or prevented. Treatment focuses on managing symptoms, slowing AOSD, and preventing flares. A flare means you are having symptoms, such as joint stiffness or a rash. AOSD flares are usually caused by stress. You may also develop chronic rheumatoid arthritis that will need to be managed. The following may be used to help control symptoms of AOSD:
- NSAIDs help decrease swelling and pain or fever. This medicine is available with or without a doctor's order. NSAIDs can cause stomach bleeding or kidney problems in certain people. If you take blood thinner medicine, always ask your healthcare provider if NSAIDs are safe for you. Always read the medicine label and follow directions.
- Steroids may be given to reduce swelling. Steroids are usually only given for a short time to relieve severe inflammation. You may need steroids at a lower dose for a long period if your symptoms do not respond to other medicines.
- Disease-modifying antirheumatic drugs (DMARDs) help slow joint damage, and relieve pain and inflammation. DMARDs also help protect your joint function.
What can I do to manage AOSD?
- Rest as needed. You may feel more tired than usual. Try not to do too much during the day. You may need to rest your hands or wrists if you work on a computer or
- Manage stress. Stress is the main trigger for AOSD flares. Try listening to music, talking to someone, or doing things that make you feel calm. Talk to your healthcare provider if you are having trouble managing stress.
- Apply ice. Ice helps relieve joint pain and reduces swelling. Use a cold pack, or put crushed ice in a plastic bag. Cover it with a towel before you apply it. Apply ice for 15 to 20 minutes every hour, or as directed.
- Apply heat. Heat helps relieve joint and muscle pain. Use a heat pack, or soak a wash cloth in warm water. Wring out the extra water before you apply it. Apply heat for 20 minutes every hour, or as directed.
- Exercise as directed. Exercise may help your joints feel less stiff. Exercise can also help you manage stress. Ask your healthcare provider how much exercise you need each day. Your provider can also tell you the exercises that are best for you. You will want to move your joints and muscles, but you need to be careful to prevent injury.
- Keep taking your medicine, even if you feel better. AOSD flares come and go. In between flares, you might feel well. It is important to keep taking your medicine as directed. DMARDs need to be taken to help keep AOSD from getting worse. Steroids help reduce inflammation. Do not stop taking steroids suddenly. A sudden stop can be dangerous. Your healthcare provider will help you take less medicine over time until you can stop safely.
When should I seek immediate care?
- You have trouble breathing.
When should I contact my healthcare provider?
- You have trouble managing stress.
- You have flares more often, or flares last longer than usual.
- You are not able to manage flares with your medicine.
- You have new or worsening symptoms.
- You have questions or concerns about your condition or care.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers 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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