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A Winding Road

The parents of a child with NOMID face challenges from the start because symptoms begin in the first few days or weeks of life. The first symptoms—fever, hive-like rash with no itch, general fatigue, joint pain and swelling, pain or redness in the eye, and headaches—are very common and can often be mistaken and treated as other conditions. Although rash is a key indicator, not all symptoms are present at the beginning nor occur the same way in every child. Also, other indicators of the disease, like inflammation of the membranes around the brain, hearing, and bone problems may not be noticed until later.

Finding the Answer

Few doctors have ever seen a child with NOMID. You may see different specialists, try various medications, and have many tests performed until other causes are eliminated.

Even when genetic testing is done there is no guarantee of a definite answer, as many NOMID patients do not show a genetic mutation. A full evaluation of the signs and symptoms since birth is necessary so that NOMID can be pinpointed . Some of the tests you may encounter are :

Skin test
Genetic test
Eye exam
Hearing tests
Blood tests
Gastrointestinal tests
A lumbar puncture to examine fluid from the spine
Ear and brain MRIs (magnetic resonance imaging)

Kineret® Helps Reduce
NOMID Symptoms

Patients in studies reported significant improvment with Kineret

More About Kineret Results

A NOMID Journey: Quinn

Learn about one child's diagnosisand how the family manages their symptoms

Watch Quinn's Story


Kineret® is a prescription medicine called an interleukin-1 receptor antagonist (IL-1ra) used to:

Kineret is not for children with Juvenile Rheumatoid Arthritis


Do not take Kineret if you are allergic to:

Before you use Kineret, tell your healthcare provider if you:

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.Kineret and other medicines may affect each other and cause serious side effects. Especially tell your healthcare provider if you take certain other medicines that affect your immune system called Tumor Necrosis Factor (TNF) Blockers. Ask your healthcare provider for a list of these medicines if you are not sure.

Kineret may cause serious side effects, including:

The most common side effects of Kineret for RA include: 


The most common side effects of Kineret for NOMID include:

Tell your healthcare provider if you have any side effect that bothers you or does not go away. These are not all of the possible side effects of Kineret. For more information ask your healthcare provider or pharmacist.

Please see full Prescribing Information