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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, consult your doctor or pharmacist.
Take this medication by mouth exactly as prescribed, usually 4 times a day or as directed by your doctor.
Take this medication with food or just after a meal to reduce stomach upset. Do not give the whole capsule to children younger than 6 years. Instead, open the capsule and sprinkle the contents onto soft food such as applesauce or mashed potatoes. Eat all of the mixture right away. Do not prepare a supply for future use.
The dosage is based on weight, medical condition, and response to therapy. Your doctor may direct you to take a low dose at first, gradually increasing the dose to lower the chance of side effects such as upset stomach. Your doctor will adjust your dose based on your cystine levels to find the best dose for you. Follow your doctor's directions carefully.
Take this medication regularly in order to get the most benefit from it. To help you remember, take it at the same times each day.
Nausea, vomiting, fever, loss of appetite, tiredness, drowsiness, 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 any of these unlikely but serious side effects occur: mental/mood changes (e.g., depression), deep sleep, seizures, unusual tiredness, headache, hearing problems (e.g., buzzing/ringing in the ears), dizziness, eye/vision problems (e.g., blurred vision, loss of vision, eye pain), skin problems (e.g., thinning of the skin, stretch marks, purple bleeding patches on the elbows), bone problems (e.g., bone/joint/back pain, leg pain, broken bones).
Seek immediate medical attention if any of these rare but very serious side effects occur: black/bloody stools, stomach/abdominal pain, vomit that looks like coffee grounds.
Cysteamine can commonly cause a rash that may not be serious. However, you may not be able to tell it apart from a rare rash that could be a sign of a severe reaction. Seek immediate medical attention if you or your child develops any rash.
A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.
This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.
In the US - Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch.
In Canada - Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.
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/gut problems (e.g., bleeding, ulcers).
This drug may make you dizzy or drowsy. Alcohol or marijuana (cannabis) can make you more dizzy or drowsy. Do not drive, use machinery, or do anything that needs alertness until you can do it safely. Limit alcoholic beverages. Talk to your doctor if you are using marijuana (cannabis).
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 between 68-77 degrees F (20-25 degrees C) away from light and moisture. Do not store in the bathroom. Keep all medicines away from children and pets.
Do not flush medications down the toilet or pour them into a drain unless instructed to do so. Properly discard this product when it is expired or no longer needed. Consult your pharmacist or local waste disposal company for more details about how to safely discard your product.
Your doctor or pharmacist may already be aware of any possible drug interactions and may be monitoring you for them. Do not start, stop, or change the dosage of any medicine before checking with your doctor or pharmacist first.
Before using this medication, tell your doctor or pharmacist of all prescription and nonprescription/herbal products you may use.
Keep a list of all your medications with you, and share the list with your doctor and pharmacist.
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 2 hours before the next dose, skip the missed dose. Take your next dose at the regular time. Do not double the dose to catch up.
Do not share this medication with others.
Laboratory and/or medical tests (e.g., cystine levels, complete blood count, electrolytes, kidney/liver tests) should be performed periodically to monitor your progress or check for side effects. Consult your doctor for more details.
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