What is cysteamine used for?
- Cysteamine is used to get rid of a protein called cystine from the eye.
Before taking cysteamine, tell your doctor:
- If you are allergic to cysteamine; any part of this medicine; or any other drugs, foods, or substances. Tell your doctor about the allergy and what signs you had.
This medicine may interact with other drugs or health problems.
Tell your doctor and pharmacist about all of your drugs (prescription or OTC, natural products, vitamins) and health problems. You must check to make sure that it is safe for you to take cysteamine with all of your drugs and health problems. Do not start, stop, or change the dose of any drug without checking with your doctor.
What are some things I need to know or do while I take cysteamine?
- Tell all of your health care providers that you take cysteamine. This includes your doctors, nurses, pharmacists, and dentists.
- Bright lights may bother you. Wear sunglasses.
- Tell your doctor if you are pregnant or plan on getting pregnant. You will need to talk about the benefits and risks of using cysteamine while you are pregnant.
- Tell your doctor if you are breast-feeding. You will need to talk about any risks to your baby.
How is cysteamine best taken?
Use cysteamine as ordered by your doctor. Read all information given to you. Follow all instructions closely.
- For the eye only.
- Take out contact lenses before using cysteamine. Lenses may be put back in 15 minutes after cysteamine is given. Do not put contacts back in if your eyes are irritated or infected.
- Do not touch the container tip to the eye, lid, or other skin.
- Tilt your head back and drop drug into the eye.
- After use, keep your eyes closed. Put pressure on the inside corner of the eye. Do this for 1 to 2 minutes. This keeps the drug in your eye.
What do I do if I miss a dose?
- Use a missed dose as soon as you think about it.
- If it is close to the time for your next dose, skip the missed dose and go back to your normal time.
- Do not use 2 doses at the same time or extra doses.
What are the side effects of cysteamine that I need to call my doctor about immediately?
WARNING/CAUTION: Even though it may be rare, some people may have very bad and sometimes deadly side effects when taking a drug. Tell your doctor or get medical help right away if you have any of the following signs or symptoms that may be related to a very bad side effect:
- Signs of an allergic reaction, like rash; hives; itching; red, swollen, blistered, or peeling skin with or without fever; wheezing; tightness in the chest or throat; trouble breathing, swallowing, or talking; unusual hoarseness; or swelling of the mouth, face, lips, tongue, or throat.
- Change in eyesight, eye pain, or very bad eye irritation.
What are some other side effects of cysteamine?
All drugs may cause side effects. However, many people have no side effects or only have minor side effects. Call your doctor or get medical help if any of these side effects or any other side effects bother you or do not go away:
- Headache.
- Eye irritation.
- Eye redness.
- Eye is bothered by bright light.
These are not all of the side effects that may occur. If you have questions about side effects, call your doctor. Call your doctor for medical advice about side effects.
You may report side effects to the FDA at 1-800-332-1088. You may also report side effects at https://www.fda.gov/medwatch.
If overdose is suspected:
If you think there has been an overdose, call your poison control center or get medical care right away. Be ready to tell or show what was taken, how much, and when it happened.
How do I store and/or throw out cysteamine?
- Store unopened bottles in the freezer.
- Each week, take out a new bottle from the freezer to use for that week. Store at room temperature.
- Let bottle thaw for 24 hours before using.
- Do not put bottle back in the freezer after thawing.
- Keep lid tightly closed.
- Throw away any part of thawed bottle not used after 7 days.
- Keep all drugs in a safe place. Keep all drugs out of the reach of children and pets.
- Throw away unused or expired drugs. Do not flush down a toilet or pour down a drain unless you are told to do so. Check with your pharmacist if you have questions about the best way to throw out drugs. There may be drug take-back programs in your area.
Consumer information use and disclaimer
- If your symptoms or health problems do not get better or if they become worse, call your doctor.
- Do not share your drugs with others and do not take anyone else's drugs.
- Some drugs may have another patient information leaflet. Check with your pharmacist. If you have any questions about cysteamine, please talk with your doctor, nurse, pharmacist, or other health care provider.
- If you think there has been an overdose, call your poison control center or get medical care right away. Be ready to tell or show what was taken, how much, and when it happened.
This information should not be used to decide whether or not to take cysteamine or any other medicine. Only the healthcare provider has the knowledge and training to decide which medicines are right for a specific patient. This information does not endorse any medicine as safe, effective, or approved for treating any patient or health condition. This is only a brief summary of general information about this medicine. It does NOT include all information about the possible uses, directions, warnings, precautions, interactions, adverse effects, or risks that may apply to cysteamine. This information is not specific medical advice and does not replace information you receive from the healthcare provider. You must talk with the healthcare provider for complete information about the risks and benefits of using this medicine.
