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This medication is used to help preserve kidney function and manage kidney damage and other problems in people with an inherited disorder that causes build-up of a certain natural substance (cystine) in the body (nephropathic cystinosis). Cystine build-up can cause problems such as kidney problems, slow growth, weak bones, and eye problems. Cysteamine helps the body get rid of cystine.
Read the Patient Information Leaflet provided by your pharmacist before you start using cysteamine and each time you get a refill. If you have any questions, ask your doctor or pharmacist.
Take this medication by mouth as directed by your doctor, usually twice a day (every 12 hours).
Taking this medication with food can affect its absorption. Take this medication on an empty stomach, at least 2 hours after and at least 30 minutes before eating food. If you cannot take it without eating, you can eat a small amount of food (4 ounces or 1/2 cup) between 1 hour before and 1 hour after taking this medication. Choose one way to take this medication (either without eating or with a small amount of food) and take it the same way with every dose. Avoid high-fat food close to the time you take your cysteamine dose.
Swallow the capsules whole with fruit juice (except for grapefruit juice). Do not crush or chew this medication or the contents of the capsules. Do not drink alcohol while you are on treatment with this drug. Drinking alcohol may increase the amount of this medication in your body which may cause serious side effects.
If you cannot swallow the capsule whole, you can open the capsule and sprinkle the contents on 4 ounces (1/2 cup) of applesauce or berry jelly and eat the mixture within 30 minutes of preparing it. Or you can sprinkle the contents into 4 ounces (1/2 cup) of fruit juice (except for grapefruit juice), stir the mixture gently until mixed, and drink it within 30 minutes. Do not crush or chew the mixture or save it for later use.
The dosage is based on your weight, medical condition, and response to treatment. To reduce your risk of side effects, your doctor may direct you to start this medication at a low dose and gradually increase your dose. Follow your doctor's instructions carefully.
Take this medication regularly to get the most benefit from it. To help you remember, take it at the same times each day.
Nausea, vomiting, stomach/abdominal pain, fever, loss of appetite, breath/skin odor, tiredness, drowsiness, dizziness, and diarrhea may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
Tell your doctor right away if you have any serious side effects, including: mental/mood changes (such as confusion, depression, lack of concentration), deep sleep, seizures, unusual tiredness, headache, hearing problems (such as buzzing/ringing in the ears), severe dizziness, eye/vision problems (such as blurred vision, loss of vision, eye pain), skin problems (such as thinning of the skin, fragile skin, stretch marks, easy bruising), bone problems (such as bone/joint/back pain, leg pain, broken bones, overly flexible joints).
Get medical help right away if you have any very serious side effects, including: signs of bleeding or ulcers in the stomach/intestines (such as black/bloody stools, severe stomach/abdominal pain, vomit that looks like coffee grounds).
Cysteamine can commonly cause a rash that is usually not serious. However, you may not be able to tell it apart from a rare rash that could be a sign of a severe reaction. Therefore, get medical help right away if you develop any rash.
Before taking cysteamine, tell your doctor or pharmacist if you are allergic to it; or to penicillamine; or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.
Before using this medication, tell your doctor or pharmacist your or your child's medical history, especially of: liver disease, stomach/intestine problems (such as bleeding, ulcers), low white blood cell count.
This drug may make you dizzy or drowsy. Do not drive, use machinery, or do any activity that requires alertness until you are sure you can perform such activities safely. Avoid alcoholic beverages.
During pregnancy, this medication should be used only when clearly needed. Discuss the risks and benefits with your doctor.
It is unknown if this medication passes into breast milk. Consult your doctor before breast-feeding.
Store at room temperature away from light and moisture. Do not store in the bathroom. Keep this medication in its original container and do not remove the desiccant. Keep the bottle tightly closed. Keep all medications away from children and pets.
Products that contain bicarbonate or carbonate may decrease the effect of this medication if taken at the same time. Therefore, if you are also taking a product that contains bicarbonate or carbonate, separate the time that you take a dose by at least one hour before or after the time that you take cysteamine delayed-release.
If someone has overdosed and has serious symptoms such as passing out or trouble breathing, call 911. Otherwise, call a poison control center right away. US residents can call their local poison control center at 1-800-222-1222. Canada residents can call a provincial poison control center.
If you miss a dose, take it as soon as you remember. If it is less than 4 hours before the next dose, skip the missed dose and resume your usual dosing schedule. Do not double the dose to catch up.
Do not share this medication with others.
Laboratory and/or medical tests (such as cystine or cysteamine levels, complete blood count, kidney/liver tests) should be performed periodically to monitor your progress or check for side effects. Consult your doctor for more details.