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Procysbi

Generic Name: Cysteamine Delayed-Release Capsules (sis TEE a meen)
Brand Name: Procysbi

Medically reviewed on Sep 5, 2018

Uses of Procysbi:

  • It is used to treat some kidney problems.

What do I need to tell my doctor BEFORE I take Procysbi?

  • If you have an allergy to cysteamine, penicillamine, or any other part of Procysbi (cysteamine delayed-release capsules).
  • 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.
  • If you are breast-feeding. Do not breast-feed while you take Procysbi (cysteamine delayed-release capsules).

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 Procysbi (cysteamine delayed-release capsules) 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 Procysbi?

For all patients taking Procysbi (cysteamine delayed-release capsules):

  • Tell all of your health care providers that you take Procysbi (cysteamine delayed-release capsules). 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 Procysbi (cysteamine delayed-release capsules) 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 Procysbi (cysteamine delayed-release capsules).
  • This medicine may raise the chance of ulcers or bleeding from the stomach or bowel. Talk with the doctor.
  • Low white blood cell counts have happened with Procysbi (cysteamine delayed-release capsules). This may lead to a higher chance of getting an infection. Call your doctor right away if you have signs of infection like fever, chills, or sore throat.
  • Tell your doctor if you are pregnant or plan on getting pregnant. You will need to talk about the benefits and risks of using Procysbi (cysteamine delayed-release capsules) while you are pregnant.

Children:

  • If your child's weight changes, talk with the doctor. The dose of Procysbi (cysteamine delayed-release capsules) may need to be changed.

How is this medicine (Procysbi) best taken?

Use Procysbi (cysteamine delayed-release capsules) as ordered by your doctor. Read all information given to you. Follow all instructions closely.

  • Swallow whole. Do not chew or crush.
  • To gain the most benefit, do not miss doses.
  • Keep taking Procysbi (cysteamine delayed-release capsules) as you have been told by your doctor or other health care provider, even if you feel well.
  • Take Procysbi (cysteamine delayed-release capsules) with fruit juice (not grapefruit juice) or water.
  • Take at least 30 minutes before or 2 hours after a meal.
  • If you cannot take Procysbi (cysteamine delayed-release capsules) without eating, you can eat a little bit of food (about 1/2 cup) within 1 hour before taking Procysbi (cysteamine delayed-release capsules) through 1 hour after taking it.
  • Always take with a little bit of food or always take on an empty stomach.
  • Avoid high-fat food close to when you take Procysbi (cysteamine delayed-release capsules).
  • You may sprinkle contents of capsule on up to 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) or water. Do not chew. Take within 30 minutes of mixing.
  • After mixing, take your dose right away. Do not store for future use.
  • Those who have feeding tubes may use Procysbi (cysteamine delayed-release capsules). Use as you have been told. Flush the feeding tube after Procysbi (cysteamine delayed-release capsules) is given.
  • Some other drugs may need to be taken at some other time than Procysbi (cysteamine delayed-release capsules). If you take other drugs, check with your doctor or pharmacist to see if you need to take them at some other time than Procysbi (cysteamine delayed-release capsules).

What do I do if I miss a dose?

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

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, swallowing, or talking; unusual hoarseness; or swelling of the mouth, face, lips, tongue, or throat.
  • Signs of electrolyte problems like mood changes, confusion, muscle pain or weakness, a heartbeat that does not feel normal, seizures, not hungry, or very bad upset stomach or throwing up.
  • Ringing in ears.
  • Dizziness or passing out.
  • Feeling very sleepy.
  • Eye pain.
  • Black, tarry, or bloody stools.
  • Throwing up blood or throw up that looks like coffee grounds.
  • Belly pain.
  • Upset stomach or throwing up.
  • Not hungry.
  • Seizures.
  • Not able to pass urine or change in how much urine is passed.
  • Feeling very tired or weak.
  • Low mood (depression).
  • 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 Procysbi (cysteamine delayed-release capsules). Most of the time, this will go back to normal after Procysbi (cysteamine delayed-release capsules) is stopped. Sometimes, loss of eyesight may happen and may not go away even after Procysbi (cysteamine delayed-release capsules) 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 Procysbi?

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:

  • Loose stools (diarrhea).
  • Feeling tired or weak.
  • Feeling sleepy.
  • 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 the FDA at 1-800-FDA-1088. You may also report side effects at http://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 Procysbi?

  • Store at room temperature.
  • Store in the original container. Do not take out the antimoisture cube or packet.
  • Protect from light.
  • Keep lid tightly closed.
  • 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.
  • 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

  • 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. Check with your pharmacist. If you have any questions about Procysbi (cysteamine delayed-release capsules), 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.

Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.

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