Generic Name: cysteamine (sis TEE a meen)
Brand Names: Cystagon
What is cysteamine?
Cysteamine is used to treat a condition called nephropathic cystinosis (NEF-roe-PATH-ik SIS-tin-OH-sis). It works by reducing the amount of cystine in the kidneys.
Nephropathic cystinosis is a rare genetic condition. Children with this condition develop a build-up of cystine in the kidneys, which can lead to kidney failure and 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 cysteamine?
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 or stomach ulcer or bleeding.
There may be other medicines that can interact with cysteamine. Tell your child's doctor about all the prescription and over-the-counter medications the child uses. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start a new medication without telling your child's doctor. Keep a list with you of all the medicines your child uses and show this list to any doctor or other healthcare provider who treats your child.
What should I discuss with my health care provider before using cysteamine?
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?
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.
What happens if I miss a dose?
Use the missed dose as soon as you remember. If the next dose is less than 2 hours away, wait until then to use the medicine and skip the missed dose. Do not use extra medicine to make up the missed dose.
What happens if I overdose?
Seek emergency medical attention if you think your child has used too much of this medicine.
Overdose symptoms may include vomiting, dry mouth, and weakness.
What should I avoid while taking cysteamine?
This medication can cause side effects that may impair thinking or reactions. Your child should be careful while driving or doing anything that requires him or her to be awake and alert.
Cysteamine side effects
Get emergency medical help if your child has any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using cysteamine and call your child's doctor at once if your child has any of these serious side effects (some of these may be caused by the cystinosis disorder and not by this medication):
fever, sore throat, and headache with a severe blistering, peeling, and red skin rash;
the first sign of any skin rash, no matter how mild;
unusual bruising or streaks on the skin;
bone or joint problems;
weakness or fainting, black, bloody, or tarry stools;
coughing up blood or vomit that looks like coffee grounds;
extreme drowsiness, loss of balance or coordination, seizure (convulsions);
confusion, hallucinations, bad dreams, or changes in mood or behavior;
urinating less than usual or not at all; or
headache, ringing in the ears, dizziness, nausea, vision problems, pain behind the eyes.
Less serious side effects may include:
nausea, vomiting, diarrhea, stomach pain;
loss of appetite;
fever, chills, body aches, flu symptoms; or
mild dizziness, nervous feeling.
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.
What other drugs will affect cysteamine?
There may be other medicines that can interact with cysteamine. Tell your child's doctor about all the prescription and over-the-counter medications the child uses. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start a new medication without telling your child's doctor. Keep a list with you of all the medicines your child uses and show this list to any doctor or other healthcare provider who treats your child.
More cysteamine resources
- Cysteamine Side Effects (in more detail)
- Cysteamine Use in Pregnancy & Breastfeeding
- Cysteamine Support Group
- 0 Reviews · Be the first to review/rate this drug
- cysteamine Advanced Consumer (Micromedex) - Includes Dosage Information
- Cysteamine MedFacts Consumer Leaflet (Wolters Kluwer)
- Cystagon Prescribing Information (FDA)
Where can I get more information?
- Your pharmacist can provide more information about cysteamine.
See also: cysteamine side effects (in more detail)
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