Kanuma (Sebelipase Alfa Rce)

Complete patient guide for uses, dosage, side effects, and safety information

Prescription Required

Quick Facts

Generic Name
sebelipase alfa rce
Drug Class
enzyme replacement therapy
Used For
lysosomal acid lipase deficiency (LAL-D)
How Taken
intravenous infusion (drip) into a vein

What Is Kanuma Used For?

Kanuma is an enzyme replacement therapy that contains sebelipase alfa rce, which is similar to the naturally occurring enzyme lysosomal acid lipase (LAL) that your body uses to break down fats.

Primary Uses

Kanuma is used to treat patients of all ages with lysosomal acid lipase deficiency (LAL-D), a condition where the body lacks or has defective LAL enzyme.

How It Works

Kanuma works by replacing the missing or defective LAL enzyme in patients with LAL-D. It helps lower the buildup of fat that causes medical complications, including impaired growth, digestive problems, liver damage (including liver failure), and heart complications. It also improves blood levels of fats, including reducing elevated LDL cholesterol (bad cholesterol) and triglycerides.

Good to know: Kanuma is intended for long-term use and should be started at as young an age as possible for best results.

How to Take Kanuma

Your doctor or nurse will give Kanuma to you or your child through an infusion (drip) into a vein. The medication will be diluted before being given to you.

Dosage Instructions

The dose is based on body weight. For infants (less than 6 months old) with signs and symptoms of the disease, the recommended starting dose is 1 mg per kg or 3 mg per kg of body weight once weekly. For children and adults, the recommended dose is 1 mg per kg body weight once every two weeks. Each infusion takes approximately 1 to 2 hours, and you will be monitored by your doctor or nurse after the infusion.

What If You Miss a Dose?

If you forget or miss your appointment for a Kanuma infusion, contact your doctor immediately to reschedule.

Important: Keep all appointments with your doctor or clinic. It’s important to have your Kanuma infusion at the appointed time each time to ensure the best treatment results.

Side Effects

Like all medications, this medicine can cause side effects. Most are mild and temporary, but some require medical attention.

Common Side Effects

These side effects occur relatively frequently and usually don’t require emergency care:

  • Headache
  • Dizziness
  • Stomach-ache, diarrhea, constipation, nausea
  • Tiredness
  • Fever
  • Cold, throat pain
  • Rash, raised rash
  • Stomach bloating
  • In infants: eyelid swelling, fast heartbeat, diarrhea, vomiting, rash, fever, low red blood cell count, runny nose, cold, cough, catheter related infection, reaction at infusion site

Seek immediate medical attention if you experience:

  • Severe allergic reaction (anaphylactic reaction)
  • Hypersensitivity with chills, eczema, throat swelling, nausea, itching and hives, decreased oxygen in blood, increased blood pressure, rapid breathing
  • Fast heartbeat, low blood pressure, shortness of breath, difficulty breathing, chest discomfort, swelling of eyelids, red eyes, runny nose, flushing, hives, paleness, wheezing, low blood oxygen, skin redness, irritability
  • In infants: irritability, agitation, vomiting, hives, eczema, itching, paleness

Important Warnings

Kanuma contains a protein and proteins can cause allergic reactions in some people, including serious, potentially life-threatening allergic reactions.

Who Should Not Take Kanuma

Do not use Kanuma if you or your child has had a life-threatening allergic reaction to sebelipase alfa rce, to any of the ingredients, or to egg that cannot be managed when receiving Kanuma again. This medicine contains egg proteins, so if you or your child has an egg allergy or history of egg allergies, you must not be given Kanuma.

Medical Conditions to Discuss

Tell your doctor if you or your child has allergies to any other medicines, foods, preservatives, or dyes. You may experience side effects while being given Kanuma or during the hours following the infusion, known as an infusion reaction, which can sometimes be severe.

Pregnancy and Breastfeeding

Check with your doctor if you are pregnant or intend to become pregnant. There is insufficient data from the use of Kanuma in pregnant women to determine if it poses any risk to the mother or fetus. It is not known whether Kanuma passes into breast milk. You should not breastfeed while using Kanuma unless you have discussed it with your doctor.

Severe Allergic Reactions: If you experience a severe infusion reaction, seek immediate medical attention. Symptoms may include shortness of breath, wheezing, difficulty breathing, swelling of face/lips/tongue, rash, itching, or hives.

Drug Interactions

Tell your doctor or pharmacist if you or your child are taking any other medicines, including any medicines, vitamins or supplements bought without a prescription.

Check with your healthcare provider: Always check with your doctor or pharmacist if you are not sure about what medicines, vitamins or supplements you are taking and if these affect Kanuma.

  • It is not known if Kanuma interferes with other medicines or if other medicines affect how Kanuma works

Alcohol & Driving

Be careful before you drive or use any machines or tools until you know how Kanuma affects you.

Alcohol

No specific alcohol interactions are mentioned in the prescribing information.

Driving and Operating Machinery

Kanuma has not been shown to impair the ability to drive or operate machinery. However, if you experience dizziness (a reported side effect), you should not drive or operate machinery until it has resolved.

Storage

Kanuma will be stored under refrigeration (2°C to 8°C, do not freeze) in the original packaging to protect from light in the hospital or pharmacy. Do not use this medicine after the expiry date.

Overdose Information

As Kanuma is given to you or your child under the supervision of your doctor, it is unlikely that you will receive too much. The medication is administered by healthcare professionals in a controlled medical setting.

Frequently Asked Questions

Kanuma works by lowering the buildup of fat that causes medical complications and improves blood levels of fats. The timeline for improvement varies by individual, but it’s intended for long-term use and should be started as early as possible.

For infants less than 6 months old with symptoms, infusions are given once weekly. For children and adults, infusions are given once every two weeks. Each infusion takes approximately 1 to 2 hours.

Do not stop taking Kanuma without checking with your doctor first. It’s important to keep all appointments and receive infusions at the appointed times for the best treatment results.

If you experience a severe infusion reaction, seek immediate medical attention. You may be given additional medicines like antihistamines, fever-reducing medicines, or corticosteroids to treat or prevent future reactions.

There is insufficient data about Kanuma use in pregnant women. Your doctor can discuss the risks and benefits with you if you are pregnant or planning to become pregnant.

The development of blood proteins against Kanuma (anti-drug antibodies) may occur during treatment. Talk to your doctor if you experience decreased effectiveness with Kanuma.

Remind any doctor, dentist, nurse or pharmacist you visit that you or your child are using Kanuma. This is important for your overall medical care.

Important Disclaimer

This information is intended for general educational purposes only and should not be considered medical advice. Always consult your healthcare provider or pharmacist before starting, stopping, or changing any medication.

If you think you may have a medical emergency, call your doctor or emergency services immediately.