Zavesca (Miglustat)
Complete patient guide for uses, dosage, side effects, and safety information
Prescription RequiredQuick Facts
What Is Zavesca Used For?
Zavesca is a specialized medication that helps manage two rare inherited diseases by controlling the buildup of harmful substances in your body.
Primary Uses
Zavesca treats mild to moderate Type 1 Gaucher disease in adults and Niemann-Pick type C (NP-C) disease in children, adolescents, and adults. Type 1 Gaucher disease causes enlargement of the liver and spleen, bone disease, and blood changes due to missing enzymes. Niemann-Pick type C disease causes fat buildup in brain cells, leading to problems with eye movements, balance, swallowing, memory, and seizures.
How It Works
Zavesca works by blocking an enzyme called ‘glucosylceramide synthase’ that’s responsible for making certain fats in your body. By reducing the production of these substances to levels your body can handle, it helps prevent the harmful buildup that causes symptoms.
Good to know: Your doctor may prescribe Zavesca if other treatments for these diseases aren’t suitable for you.
How to Take Zavesca
Take Zavesca exactly as your doctor prescribes. The dose depends on which condition you’re treating and your individual needs.
Dosage Instructions
For Type 1 Gaucher disease: Adults take one 100mg capsule three times daily (morning, afternoon, evening). For Niemann-Pick type C disease: Adults and adolescents take two 200mg capsules three times daily. Children under 12 receive doses based on body surface area calculated by your doctor. If you have kidney problems, you may start with a lower dose. Swallow capsules whole with water, preferably without food. Take at the same times each day.
What If You Miss a Dose?
If it’s almost time for your next dose, skip the missed dose and take your next dose as scheduled. If you have more time, take the missed dose as soon as you remember, then return to your normal schedule. Never take two doses at once to make up for a missed dose.
Important: Never double your dose to make up for a missed one. Continue taking Zavesca even if you feel better, unless your doctor tells you to stop.
Available Tablet Strengths
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:
- Abnormal blood test results causing easy bruising, bleeding, or fatigue
- Stomach problems like diarrhea, gas, abdominal pain, vomiting
- Weight loss or decreased appetite
- Lactose intolerance
- Sleep problems (insomnia)
- Depression
- Headache
- Dizziness
- Unclear speech
- Muscle spasms
- Joint or bone pain
- Loss of strength or feeling weak
- Chills
- Chest pain
- Skin rash
- Blurry vision
- Frequent or abnormal urination
Seek immediate medical attention if you experience:
- Tremor, usually in your hands
- Tingling, numbness, or pain in hands and feet
- Memory or thinking problems
Important Warnings
Zavesca has important safety considerations that you need to discuss with your doctor before starting treatment.
Who Should Not Take Zavesca
Don’t take Zavesca if you’re allergic to miglustat or any ingredients in the capsules, have severe kidney disease, are pregnant or planning to become pregnant, or are breastfeeding.
Medical Conditions to Discuss
Tell your doctor if you have kidney disease, liver disease, or any other medical conditions. Your doctor will perform tests before and during treatment to check your nerve function, memory, blood platelet count, and vitamin B12 levels.
Pregnancy and Breastfeeding
Zavesca can harm your baby and may affect sperm. Both men and women must use effective birth control while taking this medication. Men should continue using birth control for 3 months after stopping treatment. Don’t take Zavesca if you’re pregnant, planning to become pregnant, or breastfeeding.
Fertility Warning: Zavesca may harm sperm. All men must use effective birth control during treatment and for 3 months after stopping.
Drug Interactions
Some medications may interfere with how Zavesca works. Always tell your healthcare providers about all medicines you’re taking.
- Tell your doctor about all prescription medicines
- Include over-the-counter medications
- Mention vitamins and supplements
- Check with your pharmacist if unsure about interactions
Alcohol & Driving
Zavesca can affect your ability to drive safely and may interact with other substances.
Driving and Operating Machinery
Zavesca may make you feel dizzy. Don’t drive or operate tools or machines if you experience dizziness. Be careful until you know how this medication affects you.
Storage
Store Zavesca below 30°C in a cool, dry place away from moisture, heat, and sunlight. Keep capsules in their blister pack until you’re ready to take them. Don’t store in the bathroom, near a sink, in your car, or on window sills. Keep out of reach of children. Take expired or unused medication to any pharmacy for safe disposal.
Overdose Information
If you think you’ve taken too much Zavesca, seek immediate medical attention even if you don’t feel unwell. In Australia, call the Poisons Information Centre at 13 11 26. In New Zealand, call 0800 POISON (0800 764 766). You can also contact your doctor or go to the nearest hospital emergency department.
Frequently Asked Questions
The source doesn’t specify how long Zavesca takes to work. Your doctor will monitor your progress with regular tests and appointments to see how well the medication is working for your specific condition.
It’s recommended to take Zavesca without food. However, if you experience diarrhea, your doctor may suggest taking it with food or changing your diet to reduce lactose and carbohydrate intake.
If you have diarrhea, your doctor may ask you to reduce lactose and carbohydrate intake, take Zavesca without food, temporarily reduce your dose, or prescribe anti-diarrheal medications like loperamide. Contact your doctor if diarrhea doesn’t improve.
Some weight loss may occur when you start Zavesca treatment, but people usually stop losing weight as treatment continues. Don’t worry about initial weight loss, but talk to your doctor if this concerns you.
Your doctor will check your nerve function in arms and legs, test memory and thinking ability, monitor blood platelet count, measure vitamin B12 levels (for Gaucher disease), and check growth measurements if you’re a child or adolescent with NP-C.
No, don’t stop taking Zavesca even if you feel better unless your doctor tells you to. You must continue taking it for as long as your doctor prescribes to manage your condition effectively.
Tingling, numbness, or pain in your hands and feet is a serious side effect. Call your doctor straight away or go to the nearest hospital emergency department if you notice these symptoms.
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.