What is Cystagon? Uses, warnings & side effects

Updated May 14, 2025  •  Published Feb 5, 2021

Cystagon overview

BRAND NAMES:

  • Cystagon, Procysbi

Generic Names:

  • Cystagon

Uses:

  • Prevents buildup of cystine crystals in the kidneys.

Therapeutic Classes:

  • Renal-Urologic Agent

Forms:

  • Packet, Capsule, Delayed Release Capsule

How it’s taken:

  • By mouth

What is Cystagon used for?

Cystagon is prescribed for the treatment of nephropathic cystinosis, a rare genetic condition that causes a build-up of cystine in the kidneys and other organs. Cystine is an amino acid in the body and too much of it can cause kidney failure or other medical problems.

What form(s) does Cystagon come in?

  • Packet

  • Capsule

  • Delayed Release Capsule

What are common Cystagon dosages?

  • Capsule 150MG

Cystagon images - What does Cystagon look like?

  • Cystagon
    150mg capsule

  • Cystagon
    50mg capsule

How to take Cystagon

  • Read and follow the patient instructions that come with this medicine. Talk to your doctor or pharmacist if you have any questions.

  • Immediate-release capsule (Cystagon®): If your child is using this medicine, you may open the immediate-release capsule and mix it with food.

  • Take your medicine as directed. Your dose may need to be changed several times to find what works best for you.

  • Delayed-release capsule or granules (Procysbi®): Swallow the capsule whole. Do not crush or chew the capsule or the contents.Take this medicine the same way every day. This means take it at the same time and take it consistently, either with or without food. Do not eat high-fat food near the time that you take this medicine. Without food: It is best to take this medicine on an empty stomach. Take it at least 30 minutes before a meal or at least 2 hours after a meal.With food: If you need to eat, you may have a small amount of food (1/2 cup) between 1 hour before and 1 hour after you take this medicine.If you cannot swallow the capsule or granules whole, you may open it and mix the contents only with certain foods and fruit juices or water.Applesauce or berry jelly: Mix the granules with 4 ounces (1/2 cup) of applesauce or berry jelly. Swallow the entire mixture within 30 minutes. Do not chew the granules.Fruit juice (except grapefruit juice): Add the granules to 4 ounces (1/2 cup) of fruit juice. Gently stir to mix. Drink the mixture within 30 minutes. Do not chew the granules.Feeding tube: Mix the granules with 4 ounces (1/2 cup) of strained applesauce. Give the mixture within 30 minutes. Then flush the tube with at least 10 milliliters (10 mL) of fruit juice. Do not use other liquids to flush the tube.Missed dose: Immediate-release (Cystagon®): If it is more than 2 hours until your next dose, take the missed dose as soon as you can. If it is less than 2 hours, skip the missed dose and take your normal dose at the regular time. Do not take extra medicine to make up for the missed dose.Delayed-release (Procysbi®): If it is more than 4 hours until your next dose, take the missed dose as soon as you can. If it is less than 4 hours, skip the missed dose and take your normal dose at the regular time. Do not take extra medicine to make up for the missed dose.Store the medicine in a closed container at room temperature, away from heat, moisture, and direct light. Store the delayed-release capsules or packet in the original container. Keep it in a dry place away from light.

  • Read and follow the patient instructions that come with this medicine. Talk to your doctor or pharmacist if you have any questions.

  • Take your medicine as directed. Your dose may need to be changed several times to find what works best for you.

  • Delayed-release capsule or granules (Procysbi®): Swallow the capsule whole. Do not crush or chew the capsule or the contents.Take this medicine the same way every day. This means take it at the same time and take it consistently, either with or without food. Do not eat high-fat food near the time that you take this medicine. Without food: It is best to take this medicine on an empty stomach. Take it at least 30 minutes before a meal or at least 2 hours after a meal.With food: If you need to eat, you may have a small amount of food (1/2 cup) between 1 hour before and 1 hour after you take this medicine.If you cannot swallow the capsule or granules whole, you may open it and mix the contents only with certain foods and fruit juices or water.Applesauce or berry jelly: Mix the granules with 4 ounces (1/2 cup) of applesauce or berry jelly. Swallow the entire mixture within 30 minutes. Do not chew the granules.Fruit juice (except grapefruit juice): Add the granules to 4 ounces (1/2 cup) of fruit juice. Gently stir to mix. Drink the mixture within 30 minutes. Do not chew the granules.Feeding tube: Mix the granules with 4 ounces (1/2 cup) of strained applesauce. Give the mixture within 30 minutes. Then flush the tube with at least 10 milliliters (10 mL) of fruit juice. Do not use other liquids to flush the tube.Missed dose: Immediate-release (Cystagon®): If it is more than 2 hours until your next dose, take the missed dose as soon as you can. If it is less than 2 hours, skip the missed dose and take your normal dose at the regular time. Do not take extra medicine to make up for the missed dose.Delayed-release (Procysbi®): If it is more than 4 hours until your next dose, take the missed dose as soon as you can. If it is less than 4 hours, skip the missed dose and take your normal dose at the regular time. Do not take extra medicine to make up for the missed dose.Store the medicine in a closed container at room temperature, away from heat, moisture, and direct light. Store the delayed-release capsules or packet in the original container. Keep it in a dry place away from light.

  • Immediate-release capsule (Cystagon®): If your child is using this medicine, you may open the immediate-release capsule and mix it with food.

What to do if you miss a dose of Cystagon

Cystagon contraindications - Who shouldn't take Cystagon?

  • This medicine is not right for everyone. Do not use it if you had an allergic reaction to cysteamine or penicillamine.

Cystagon warnings

  • This medicine may make you bleed, bruise, or get infections more easily. Take precautions to prevent illness and injury. Wash your hands often.

  • Keep all medicine out of the reach of children. Never share your medicine with anyone.

  • Tell your doctor if you are pregnant or breastfeeding, or if you have liver disease, stomach or bowel problems, or a history of head injury, depression, or seizures.

  • This medicine may cause the following problems: Skin, joint, or bone problemsStomach or bowel problems, including ulcers or bleedingBenign intracranial hypertension (increased pressure inside your head)

  • This medicine may make you dizzy or drowsy. Do not drive or do anything else that could be dangerous until you know how this medicine affects you.

  • Your doctor will do lab tests at regular visits to check on the effects of this medicine. Keep all appointments.

  • Skin changes, easy bruising, red or purple lines on your skin

  • Severe headache, vision problems, ringing or buzzing in your ears

  • Severe stomach pain, nausea, vomiting, loss of appetite

Cystagon interactions & what to avoid when taking Cystagon

  • Take Procysbi® at least 1 hour before or after you take medicines that contain bicarbonate or carbonate.

  • Do not drink alcohol while you are using this medicine.

  • This medicine may make you dizzy or drowsy. Do not drive or doing anything else that could be dangerous until you know how this medicine affects you.

  • Your doctor will do lab tests at regular visits to check on the effects of this medicine. Keep all appointments.

  • Keep all medicine out of the reach of children. Never share your medicine with anyone.

Cystagon side effects - How does Cystagon make you feel?

Serious Side Effects

  • Severe stomach pain, nausea, vomiting, loss of appetite

  • Depression, severe sleepiness, seizures

  • Bone, joint, or leg pain

  • Severe headache, vision problems, ringing or buzzing in your ears

  • Allergic reaction: Itching or hives, swelling in your face or hands, swelling or tingling in your mouth or throat, chest tightness, trouble breathing

  • Blistering, peeling, red skin rash

  • Bloody vomit, black, tarry stools

  • Fever, chills, cough, sore throat, body aches

  • Skin changes, easy bruising, red or purple lines on your skin

Less Serious Side Effects

  • Tiredness

  • Mild nausea, vomiting, diarrhea, stomach pain or upset

  • Headache

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