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

What is Cystagon (cysteamine)?

Cysteamine works by reducing the amount of cystine (an amino acid) in the kidneys.

Cysteamine is used to treat nephropathic cystinosis (NEF-roe-PATH-ik SIS-tin-OH-sis), a rare genetic condition that causes a build-up of cystine in the kidneys. Too much cystine can cause kidney failure or other medical problems.

Cysteamine may also be used for other purposes not listed in this medication guide.

What is the most important information I should know about Cystagon (cysteamine)?

Follow all directions on your medicine label and package. Tell each of your healthcare providers about all your medical conditions, allergies, and all medicines you use.

Slideshow: Prescription Drug Addiction - Are You at Risk?

What should I discuss with my health care provider before taking Cystagon (cysteamine)?

You should not use this medication if you are allergic to cysteamine or penicillamine.

To make sure cysteamine is safe for you, tell your doctor if you have:

  • any type of skin rash;

  • bone problems (including fractures);

  • epilepsy or other seizure disorder;

  • liver disease;

  • a history of depression or nervous system disorder; or

  • a history of stomach ulcer or bleeding.

FDA pregnancy category C. It is not known whether cysteamine will harm an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant while using this medication.

It is not known whether cysteamine passes into breast milk or if it could harm a nursing baby. You should not breast-feed while using this medicine.

How should I use Cystagon (cysteamine)?

Follow all directions on your prescription label. Your doctor may occasionally change your dose to make sure you get the best results. Do not take this medicine in larger or smaller amounts or for longer than recommended.

Do not crush or chew a delayed-release capsule. Swallow it whole.

To make swallowing easier (especially in a child younger than 6 years old) you may open the cysteamine capsule and sprinkle the medicine into spoonful of applesauce or a small amount of orange juice or apple juice. Swallow right away without chewing. Do not save the mixture for later use. Ask your doctor about the types of foods to mix with cysteamine for best results.

While using cysteamine, you may need frequent blood tests. Your skin and your bones may also need to be checked.

Cystinosis is often treated with a combination of drugs, including vitamin and mineral supplements. Use all medications as directed by your doctor. Read the medication guide or patient instructions provided with each medication. Do not change your doses or medication schedule without your doctor's advice.

Store at room temperature away from moisture, heat, and light.

What happens if I miss a dose?

Take the missed dose as soon as you remember. Skip the missed dose if your next dose is less than 4 hours away. Do not take extra medicine to make up the missed dose.

What happens if I overdose?

Seek emergency medical attention or call the Poison Help line at 1-800-222-1222.

What should I avoid while taking Cystagon (cysteamine)?

This medication may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be alert.

Cystagon (cysteamine) side effects

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Stop using cysteamine and call your doctor at once if you have any of these side effects (some of these may be caused by your cystinosis disorder and not by this medication):

  • seizure (convulsions);

  • unusual bruising or streaks on the skin;

  • severe headache, ringing in your ears, dizziness, nausea, vision problems, pain behind your eyes;

  • bloody or tarry stools, coughing up blood or vomit that looks like coffee grounds;

  • the first sign of any skin rash, no matter how mild; or

  • severe skin reaction--fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Common side effects may include:

  • stomach pain, vomiting, loss of appetite, diarrhea;

  • drowsiness, mild dizziness or headache;

  • unusual breath odor or skin odor;

  • fever; or

  • lack of energy.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

See also: Side effects (in more detail)

What other drugs will affect Cystagon (cysteamine)?

Other drugs may interact with cysteamine, including prescription and over-the-counter medicines, vitamins, and herbal products. Tell each of your health care providers about all medicines you use now and any medicine you start or stop using.

Where can I get more information?

  • Your pharmacist can provide more information about cysteamine.
  • Remember, keep this and all other medicines out of the reach of children, never share your medicines with others, and use this medication only for the indication prescribed.
  • Disclaimer: Every effort has been made to ensure that the information provided by Cerner Multum, Inc. ('Multum') is accurate, up-to-date, and complete, but no guarantee is made to that effect. Drug information contained herein may be time sensitive. Multum information has been compiled for use by healthcare practitioners and consumers in the United States and therefore Multum does not warrant that uses outside of the United States are appropriate, unless specifically indicated otherwise. Multum's drug information does not endorse drugs, diagnose patients or recommend therapy. Multum's drug information is an informational resource designed to assist licensed healthcare practitioners in caring for their patients and/or to serve consumers viewing this service as a supplement to, and not a substitute for, the expertise, skill, knowledge and judgment of healthcare practitioners. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. Multum does not assume any responsibility for any aspect of healthcare administered with the aid of information Multum provides. The information contained herein is not intended to cover all possible uses, directions, precautions, warnings, drug interactions, allergic reactions, or adverse effects. If you have questions about the drugs you are taking, check with your doctor, nurse or pharmacist.

Copyright 1996-2012 Cerner Multum, Inc. Version: 1.09. Revision Date: 2013-11-19, 9:24:12 PM.