July 27, 2016
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Cystagon Patient Information including How Should I Take

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

Your child should not use this medication if he or she is allergic to cysteamine or penicillamine (Cuprimine, Depen).

Before using cysteamine, tell the doctor if your child is allergic to any drugs, or if the child has:

  • skin or bone problems (including fractures);
  • liver disease;
  • epilepsy or other seizure disorder;
  • a history of depression or nervous system disorder; or
  • a history of stomach ulcer or bleeding.

If your child has any of these conditions, he or she may need a dose adjustment or special tests to safely take cysteamine.

FDA pregnancy category C. This medication may be harmful to an unborn baby. Tell your child's doctor if the child is pregnant.

It is not known whether cysteamine passes into breast milk or if it could harm a nursing baby.

How should I use cysteamine (Cystagon)?

Use this medication exactly as prescribed by your child's doctor. Do not use it in larger amounts or for longer than recommended. Follow the directions on your child's prescription label.

Your child's doctor may occasionally change the dose to make sure and get the best results from this medication.

Do not give a whole capsule to a child who cannot swallow it easily, especially a child younger than 6 years old. Open the capsule and sprinkle the medicine into the child's food. Ask your child's doctor about the types of foods to mix cysteamine with for best results.

To be sure this medication is not causing harmful effects, your child's blood will need to be tested on a regular basis. The skin and bones may also need to be checked. Do not miss any scheduled appointments.

Cystinosis is often treated with a combination of different medications, including vitamin and mineral supplements. To best treat your child's condition, use all of his or her medications as directed by the doctor. Be sure to read the medication guide or patient instructions provided with each of your medications. Do not change your doses or medication schedule without advice from your child's doctor.

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

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