Cysteamine

Generic Name: cysteamine (sis-TEE-a-meen)
Brand Name: Cystagon

Cysteamine is used for:

Managing nephropathic cystinosis (a rare, serious kidney disease). It is also used to treat Huntington disease.

Cysteamine is a cystine-depleting agent. It works by reducing the amount of cystine in the body.

Do NOT use cysteamine if:

  • you are allergic to any ingredient in cysteamine or to penicillamine

Contact your doctor or health care provider right away if any of these apply to you.

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Before using cysteamine:

Some medical conditions may interact with cysteamine. Tell your doctor or pharmacist if you have any medical conditions, especially if any of the following apply to you:

  • if you are pregnant, planning to become pregnant, or are breast-feeding
  • if you are taking any prescription or nonprescription medicine, herbal preparation, or dietary supplement
  • if you have allergies to medicines, foods, or other substances
  • if you have a history of stomach or bowel problems (eg, ulcers, bleeding), seizures, mental or mood problems (eg, depression), or exhaustion
  • if you have a skin rash, bone problems, liver problems, or blood problems

Some MEDICINES MAY INTERACT with cysteamine. However, no specific interactions with cysteamine are known at this time.

Ask your health care provider if cysteamine may interact with other medicines that you take. Check with your health care provider before you start, stop, or change the dose of any medicine.

How to use cysteamine:

Use cysteamine as directed by your doctor. Check the label on the medicine for exact dosing instructions.

  • An extra patient leaflet is available with cysteamine. Talk to your pharmacist if you have questions about this information.
  • Take cysteamine by mouth with or without food.
  • For children younger than 6 years of age, the capsule should be opened and the contents sprinkled over food.
  • If you miss a dose of cysteamine, take it as soon as possible. If it is within 2 hours of your next dose, skip the missed dose and go back to your regular dosing schedule. Do not take 2 doses at once.

Ask your health care provider any questions you may have about how to use cysteamine.

Important safety information:

  • Cysteamine may cause drowsiness or dizziness. These effects may be worse if you take it with alcohol or certain medicines. Use cysteamine with caution. Do not drive or perform other possibly unsafe tasks until you know how you react to it.
  • Lab tests, including blood cell counts and liver function, may be performed while you use cysteamine. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
  • PREGNANCY and BREAST-FEEDING: If you become pregnant, contact your doctor. You will need to discuss the benefits and risks of using cysteamine while you are pregnant. It is not known if cysteamine is found in breast milk. Do not breast-feed while taking cysteamine.

Possible side effects of cysteamine:

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Appetite loss; diarrhea; drowsiness; lack of energy; nausea; stomach pain; unpleasant breath odor; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry, or bloody stools; bloody vomit; bone or joint pain; buzzing or "whooshing" sound in the ear; confusion; depression; dizziness; eye pain; fever, chills, or sore throat; headache; mental or mood changes; persistent or severe nausea, vomiting, or loss of appetite; red, swollen, blistered, or peeling skin; seizures; severe or persistent drowsiness or lack of energy; severe stomach pain; unusual skin problems (eg, stretch mark-looking areas); unusual tiredness or weakness; vision changes (eg, blurred vision, double vision, loss of vision).

This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects. To report side effects to the appropriate agency, please read the Guide to Reporting Problems to FDA.

If OVERDOSE is suspected:

Contact 1-800-222-1222 (the American Association of Poison Control Centers), your local poison control center, or emergency room immediately. Symptoms may include black, tarry, or bloody stools; decreased motor activity; severe or persistent vomiting; severe stomach or lower back pain.

Proper storage of cysteamine:

Store cysteamine at room temperature, between 68 and 77 degrees F (20 and 25 degrees C). Store away from heat, moisture, and light. Do not store in the bathroom. Keep cysteamine out of the reach of children and away from pets.

General information:

  • If you have any questions about cysteamine, please talk with your doctor, pharmacist, or other health care provider.
  • Cysteamine is to be used only by the patient for whom it is prescribed. Do not share it with other people.
  • If your symptoms do not improve or if they become worse, check with your doctor.
  • Check with your pharmacist about how to dispose of unused medicine.

This information should not be used to decide whether or not to take cysteamine or any other medicine. Only your health care provider has the knowledge and training to decide which medicines are right for you. This information does not endorse any medicine as safe, effective, or approved for treating any patient or health condition. This is only a brief summary of general information about cysteamine. It does NOT include all information about the possible uses, directions, warnings, precautions, interactions, adverse effects, or risks that may apply to cysteamine. This information is not specific medical advice and does not replace information you receive from your health care provider. You must talk with your healthcare provider for complete information about the risks and benefits of using cysteamine.

Issue Date: May 1, 2013
Database Edition 13.2.1.002
Copyright © 2013 Wolters Kluwer Health, Inc.

Disclaimer: This information should not be used to decide whether or not to take this medicine or any other medicine. Only your health care provider has the knowledge and training to decide which medicines are right for you. This information does not endorse any medicine as safe, effective, or approved for treating any patient or health condition. This is only a brief summary of general information about this medicine. It does NOT include all information about the possible uses, directions, warnings, precautions, interactions, adverse effects, or risks that may apply to this medicine. This information is not specific medical advice and does not replace information you receive from your health care provider. You must talk with your healthcare provider for complete information about the risks and benefits of using this medicine.

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