Cysteamine (Systemic)

Adult Medication

Brand Names: US

Cystagon; Procysbi

What is this drug used for?

  • It is used to treat some kidney problems.

What do I need to tell my doctor BEFORE I take this drug?

  • If you have an allergy to cysteamine, penicillamine, or any other part of this drug.
  • If you are allergic to any drugs like this one, any other drugs, foods, or other substances. Tell your doctor about the allergy and what signs you had, like rash; hives; itching; shortness of breath; wheezing; cough; swelling of face, lips, tongue, or throat; or any other signs.
This drug 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 this drug 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 this drug?

  • Tell all of your health care providers that you take this drug. This includes your doctors, nurses, pharmacists, and dentists.
  • Avoid driving and doing other tasks or actions that call for you to be alert until you see how this drug affects you.
  • Have blood work checked as you have been told by the doctor. Talk with the doctor.
  • Have your urine checked as you have been told by your doctor.
  • Have an eye exam as you have been told by your doctor.
  • Avoid drinking alcohol while taking this drug.
  • Tell your doctor if you are pregnant or plan on getting pregnant. You will need to talk about the benefits and risks of using this drug while you are pregnant.
  • Tell your doctor if you are breast-feeding. You will need to talk about any risks to your baby.

What are some side effects that I need to call my doctor about right away?

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 or talking; unusual hoarseness; or swelling of the mouth, face, lips, tongue, or throat.
  • Signs of infection like fever, chills, very bad sore throat, ear or sinus pain, cough, more sputum or change in color of sputum, pain with passing urine, mouth sores, or wound that will not heal.
  • Very bad belly pain.
  • Ringing in ears.
  • Dizziness or passing out.
  • Feeling very sleepy.
  • Eye pain.
  • Black, tarry, or bloody stools.
  • Any unexplained bruising or bleeding.
  • Throwing up blood or throw up that looks like coffee grounds.
  • Very upset stomach or throwing up.
  • Seizures.
  • Not able to pass urine or change in how much urine is passed.
  • Feeling very tired or weak.
  • Low mood (depression).
  • Hallucinations (seeing or hearing things that are not there).
  • Bad dreams.
  • Change in balance.
  • Feeling confused.
  • A very bad skin reaction (toxic epidermal necrolysis) may happen. It can cause very bad health problems that may not go away, and sometimes death. Get medical help right away if you have signs like red, swollen, blistered, or peeling skin (with or without fever); red or irritated eyes; or sores in your mouth, throat, nose, or eyes.
  • Raised pressure in the brain has happened with this drug. Most of the time, this will go back to normal after this drug is stopped. Sometimes, loss of eyesight may happen and may not go away even after this drug is stopped. Call your doctor right away if you have a headache or eyesight problems like blurred eyesight, seeing double, or loss of eyesight.
  • Very bad skin problems like stretch marks, joint problems, and bone problems like broken bones and deformed bones have happened with this drug. Call your doctor right away if you have any skin changes or bone or joint pain.

What are some other side effects of this drug?

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:
  • Upset stomach or throwing up.
  • Loose stools (diarrhea).
  • Not hungry.
  • Feeling tired or weak.
  • Feeling sleepy.
  • Belly pain.
  • Change in body odor.
  • Bad breath.
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 your national health agency.

How is this drug best taken?

Use this drug as ordered by your doctor. Read all information given to you. Follow all instructions closely.

All products:

  • To gain the most benefit, do not miss doses.
  • Keep taking this drug as you have been told by your doctor or other health care provider, even if you feel well.
  • Swallow whole. Do not chew or crush.

Short-acting products:

  • You may sprinkle contents of capsule on soft food or liquid. Do not chew.

Long-acting products:

  • Take this drug with fruit juice (not grapefruit juice).
  • Take at least 30 minutes before or 2 hours after a meal.
  • If you cannot take this drug without eating, eat only a little bit of food 1 hour before or 1 hour after taking this drug.
  • Always take with a little bit of food or always take on an empty stomach.
  • Avoid high-fat food close to when you take this drug.
  • You may sprinkle contents of capsule on 1/2 cup (4 ounces/120 mL) of applesauce or berry jelly. The contents may also be mixed in 1/2 cup (4 ounces/120 mL) of fruit juice (not grapefruit juice). Do not chew. Take within 30 minutes of mixing.
  • Some other drugs may need to be taken at some other time than this drug. If you take other drugs, check with your doctor or pharmacist to see if you need to take them at some other time than this drug.

What do I do if I miss a dose?

Short-acting products:

  • Take a missed dose as soon as you think about it.
  • If it is less than 2 hours until your next dose, skip the missed dose and go back to your normal time.

Long-acting products:

  • Take a missed dose as soon as you think about it.
  • If the next dose is less than 4 hours away, skip the missed dose and go back to your normal time.

All products:

  • Do not take 2 doses at the same time or extra doses.

How do I store and/or throw out this drug?

  • Store at room temperature.
  • Protect from light.
  • Store in a dry place. Do not store in a bathroom.
  • Keep all drugs in a safe place. Keep all drugs out of the reach of children and pets.
  • Check with your pharmacist about how to throw out unused drugs.

General drug facts

  • 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.
  • Keep a list of all your drugs (prescription, natural products, vitamins, OTC) with you. Give this list to your doctor.
  • Talk with the doctor before starting any new drug, including prescription or OTC, natural products, or vitamins.
  • Some drugs may have another patient information leaflet. If you have any questions about this drug, 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.

Consumer Information Use and Disclaimer

This information should not be used to decide whether or not to take this medicine 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 this medicine. 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.

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