Cystagon (Mercaptamine (Cysteamine) Bitartrate)
Complete patient guide for uses, dosage, side effects, and safety information
Prescription RequiredQuick Facts
What Is Cystagon Used For?
Cystagon is a specialized medication designed to treat a rare inherited condition that affects the kidneys and other organs.
Primary Uses
Cystagon is used to manage nephropathic cystinosis in both children and adults. This is a rare inherited disorder where cystine builds up in organs like the kidneys, causing kidney damage and the loss of important substances like glucose, proteins, and electrolytes through urine.
How It Works
The active ingredient mercaptamine (cysteamine) works by reacting with cystine in your cells, which helps reduce the harmful buildup. This can help slow down kidney damage and other complications from the condition.
Good to know: Regular blood tests can detect cystinosis by measuring cystine levels in white blood cells, helping your doctor monitor your condition and adjust treatment.
How to Take Cystagon
Your doctor will determine the right dose based on your weight and will gradually increase it over several weeks to reach the best maintenance dose for you.
Dosage Instructions
The starting dose for both children and adults is 200 mg to 300 mg/m²/day, divided into four doses throughout the day. Over 4 to 6 weeks, your doctor will increase this to a maintenance dose: for children up to 12 years, 1.3 g/m²/day; for patients over 12 years and weighing 50 kg or more, 2 g/day. Take Cystagon at the same times each day for best results. Children under 6 years should not swallow whole capsules – the capsule can be opened and contents sprinkled on food or mixed in formula.
What If You Miss a Dose?
If it’s less than 2 hours before your next scheduled dose, skip the missed dose and take your next dose as planned. Otherwise, take the missed dose as soon as you remember, then return to your regular schedule.
Important: Never take a double dose to make up for a missed dose. This could be dangerous.
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:
- nausea
- vomiting
- loss of appetite
- diarrhea
- drowsiness
- rash
- unpleasant breath odor
- fever
- feeling tired or fatigued
Seek immediate medical attention if you experience:
- stomach pain, loss of appetite, or vomiting blood
- seizures, depression, or excessive sleepiness
- low white blood cell count
- abnormal liver function
- headache, dizziness, double vision, blurry vision, loss of vision
- pain behind the eye or with eye movement
- skin lesions, bone lesions, or joint problems
- severe skin rash
Important Warnings
Before starting Cystagon, it’s crucial to discuss your medical history and current medications with your doctor to ensure safe treatment.
Who Should Not Take Cystagon
Do not take Cystagon if you are allergic to mercaptamine, penicillamine, or any ingredients in the capsules. Signs of allergic reactions include shortness of breath, wheezing, swelling of face/lips/tongue, or skin rash and hives. Also avoid if the medication is expired or the packaging is damaged.
Medical Conditions to Discuss
Tell your doctor if you have: allergies to medicines, foods, or dyes; skin rash or bone problems; history of seizures, exhaustion, depression, or nervous system problems; stomach or intestinal problems including ulcers or bleeding; or blood problems.
Pregnancy and Breastfeeding
Inform your doctor if you are pregnant, planning to become pregnant, or breastfeeding. Your doctor will discuss the risks and benefits with you.
Children Safety: Take special precautions with children to prevent the medicine from entering their airways or lungs, which could be dangerous.
Drug Interactions
Some medications may interfere with how Cystagon works, so it’s important to tell your healthcare team about all medicines you’re taking.
Electrolyte supplements: You will still need electrolyte replacement supplements (like potassium) while taking Cystagon – don’t stop these unless your doctor tells you to.
- electrolyte replacement supplements (still needed during Cystagon therapy)
- any prescription medications
- over-the-counter medicines
- vitamins and supplements
Alcohol & Driving
Cystagon can affect your ability to drive or operate machinery safely, so take precautions until you know how it affects you.
Alcohol
No specific alcohol interactions are mentioned in the prescribing information, but discuss alcohol use with your doctor.
Driving and Operating Machinery
Be careful when driving or using machinery until you know how Cystagon affects you. This medicine may cause drowsiness or tiredness. Children should be careful when riding bicycles or climbing trees. If you feel light-headed or dizzy when standing up, get up slowly.
Storage
Store Cystagon capsules below 25°C in a cool, dry place away from moisture, heat, and sunlight. Keep capsules in their original bottle until you’re ready to take them. Store in a locked cupboard at least 1.5 meters above ground, away from children. Don’t store in bathrooms, near sinks, in cars, or on window sills. Take expired or unwanted medicine to any pharmacy for safe disposal.
Overdose Information
If you think you or someone else has taken too much Cystagon, seek immediate medical attention. Call the Poisons Information Centre (Australia: 13 11 26), contact your doctor, or go to the nearest hospital emergency department, even if there are no obvious symptoms. Overdose symptoms may include vomiting, dehydration, extreme tiredness, drowsiness, lack of energy, or heart problems.
Frequently Asked Questions
Your doctor will gradually increase your dose over 4 to 6 weeks to reach the most effective maintenance dose. Regular blood tests will monitor cystine levels to determine if the medication is working properly.
For children who cannot swallow capsules whole, the capsule can be opened and contents sprinkled on food or mixed in formula. Ask your doctor for specific instructions about taking with food.
Do not stop taking Cystagon or change the dose without checking with your doctor first. This medication manages a serious condition, so stopping suddenly could be harmful.
If it’s less than 2 hours before your next dose, skip the missed dose. Otherwise, take it as soon as you remember, then return to your regular schedule. Never take a double dose.
Regular blood tests measure cystine levels in your white blood cells to help determine the correct dose. You’ll also need tests to monitor electrolyte levels and check for serious side effects.
Yes, Cystagon is used in both children and adults. However, children under 6 years should not swallow whole capsules due to choking risk – the capsule can be opened and mixed with food or formula.
You will need electrolyte replacement supplements (like potassium) because cystinosis causes your kidneys to lose important electrolytes. Take these supplements exactly as instructed by your doctor.
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.