Talking to Your Child's
Doctor About HIDS/MKD

If you think your child might have Hyperimmunoglobulin D Syndrome / Mevalonate Kinase Deficiency (HIDS/MKD), you can start by having a conversation with a doctor. If the doctor suspects that your child might have HIDS/MKD, he or she may refer your child to a pediatric rheumatologist.

Before a pediatric rheumatologist can accurately diagnose HIDS/MKD, your child will need to complete a physical examination and the doctor will need a complete medical history, including:

How long, how often, and when your child has had fever, rash, joint discomfort, abdominal pain, swollen lymph nodes, and/or canker sores (aphthous ulcers)
Whether these symptoms affect your child's normal activity level
Whether there are any other possible causes of symptoms, including an injury or another illness

Record your child's HIDS/MKD symptoms and medications

Recording your child's HIDS/MKD symptoms and medications

Keeping track of your child's symptoms and medications, and sharing this information with the doctor, will help him or her determine whether your child's HIDS/MKD symptoms have changed over time.

Download the symptom tracker

Keeping track of your child's HIDS/MKD symptoms and medications, and sharing this information with the doctor, will help him or her determine whether your child's HIDS/MKD symptoms have changed over time.

Download the symptom tracker

Things to Consider

If you feel overwhelmed when meeting with your child's doctor, consider bringing someone with you who can listen and take notes if necessary

Answer the doctor's questions honestly and directly

Feel free to talk about your emotions, stress level, or discomfort if these things are affecting you or your family

If your child is diagnosed with HIDS/MKD, talk to his or her doctor about ILARIS^®, learn what you can, and ask if ILARIS may be right for your child.

Next: Finding Support

More

Less

IMPORTANT SAFETY INFORMATION

ILARIS can cause serious side effects, including increased risk of serious infections. ILARIS can lower the ability of your immune system to fight infections. Your healthcare provider should:

test you for tuberculosis (TB) before you receive ILARIS
monitor you closely for symptoms of TB during treatment with ILARIS
check you for symptoms of any type of infection before, during, and after treatment with ILARIS

Tell your healthcare provider right away if you have any symptoms of an infection such as fever, sweats or chills, cough, flu-like symptoms, weight loss, shortness of breath, blood in your phlegm, sores on your body, warm or painful areas on your body, diarrhea or stomach pain, or feeling very tired.

You should not receive ILARIS if you are allergic to canakinumab or any of the ingredients in ILARIS.

Before receiving ILARIS, tell your healthcare provider about all your medical conditions, including if you:

think you have or are being treated for an active infection
have symptoms of infection
have a history of infections that keep coming back
have a history of low white blood cells
have or have had HIV, Hepatitis B, or Hepatitis C
are scheduled to receive any immunizations (vaccines). You should not get 'live vaccines' if you are receiving ILARIS.
are pregnant or planning to become pregnant. It is not known if ILARIS will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while receiving ILARIS.
are breastfeeding or planning to breastfeed. It is not known if ILARIS passes into your breast milk. You and your healthcare provider should decide if you will receive ILARIS or breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Especially tell your healthcare provider if you take:

medicines that affect the immune system
medicines called interleukin-1 (IL-1) blocking agents such as Kineret^® (anakinra) or Arcalyst^® (rilonacept)
medicines called Tumor Necrosis Factor (TNF) inhibitors such as Enbrel^® (etanercept), Humira^® (adalimumab), Remicade^® (infliximab), Simponi^® (golimumab), or Cimzia^® (certolizumab pegol)
medicines that affect enzyme metabolism.

Ask your healthcare provider if you are not sure.

ILARIS can cause serious side effects including:

serious infections
decreased ability of the body to fight infections (immunosuppression). For people treated with medicines that cause immunosuppression like ILARIS, the chances of getting cancer may increase.
allergic reactions. Allergic reactions can happen while receiving ILARIS. Call your healthcare provider right away if you have any of these symptoms of an allergic reaction: rash, itching and hives, difficulty breathing or swallowing, dizziness, or feeling faint.
risk of infection with live vaccines. You should not get live vaccines if you are receiving ILARIS. Tell your healthcare provider if you are scheduled to receive any vaccines.

The most common side effects of ILARIS when used for the treatment of TRAPS, HIDS/MKD, and FMF: cold symptoms, upper respiratory tract infection, runny nose, sore throat, nausea, vomiting, and diarrhea (gastroenteritis), and injection site reactions (such as redness, swelling, warmth, or itching)

Tell your healthcare provider about any side effect that bothers you or does not go away.

What is Macrophage Activation Syndrome (MAS)?

MAS is a syndrome associated with SJIA and some other auto-inflammatory diseases like HIDS/MKD that can lead to death. Tell your healthcare provider right away if your SJIA symptoms get worse or if you have any of these symptoms of an infection:

a fever lasting longer than 3 days
a cough that does not go away
redness in one part of your body
warm feeling or swelling of your skin

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see full Prescribing Information, including Medication Guide.

INDICATION

ILARIS^® (canakinumab) is a prescription medicine injected by your healthcare provider just below the skin (subcutaneous) used to treat adults and pediatric patients with the following Periodic Fever Syndromes

Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS)
Hyperimmunoglobulin D Syndrome (HIDS) also known as Mevalonate Kinase Deficiency (MKD)
Familial Mediterranean Fever (FMF)

All trademarks and registered trademarks are the property of their respective owners.

Talking to Your Child's Doctor About HIDS/MKD

Recording your child's HIDS/MKD symptoms and medications

Things to Consider

Things to Consider

Leaving Novartis

Talking to Your Child's
Doctor About HIDS/MKD