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How to make the most of your treatment

PROCYSBI® is designed to work over 12 hours. Take PROCYSBI (cysteamine bitartrate) delayed-release capsules every 12 hours at the same time every day as prescribed by the doctor. For example, you might take PROCYSBI at 7:00am and again at 7:00pm.

Reminders about taking PROCYSBI:

  • Take PROCYSBI every 12 hours (2 times every 24 hours) at the same time every day
  • Take PROCYSBI at least 1 hour before or after you take medicines that contain bicarbonate or carbonate
  • Work with your healthcare team to schedule regular cystine level testing
  • Food and drinks can affect how the medicine in PROCYSBI is released, so it’s important to take PROCYSBI only as directed
  • Do not eat for at least 2 hours before taking PROCYSBI and at least 30 minutes after you take it
  • If you can't take PROCYSBI without eating, take it with no more than a ½ cup (4 oz.) of food up to 1 hour before or after you take PROCYSBI
  • Avoid high-fat foods (such as avocados, cheese, and nuts) right before and after dosing
  • Take PROCYSBI the same way each time

If you have questions about how to take PROCYSBI, review the Instructions for Use or contact your doctor or pharmacist.

I stay adherent to my medicine because I want to stay healthy and just live my life. It's worth it to be adherent. It's worth it to be healthy.

—Jacob, adult with cystinosis

Post-transplant: Staying on treatment

Staying on treatment after a kidney transplant is important, as a study showed over 86% 10-year survival rates for post-transplant cystinosis patients who remained on treatment. A new kidney does not end cystinosis, but CDT* can help delay or reduce new damage in other organs.

*CDT = Cystine-depleting therapy

Tip:

Manage your levels by taking your medicine at the same time every day, even when you feel good. Your cystine levels can continue to rise and cause organ damage without you knowing.

The role of cystine level testing

Your doctor will order cystine level tests to measure the amount of cystine in your white blood cells (WBCs) before and during treatment with PROCYSBI. Cystine level tests help your doctor determine:

  • The dose of PROCYSBI that is right for you
  • How well the medicine is working to manage your cystine levels
  • When and how much the dose should be increased in growing children

Types of cystine level tests

Your cystine levels can be measured with regularly scheduled mixed leukocytes or granulocytes tests. Your target cystine level is different depending on the type of test, as follows:

TYPE OF TESTTEST-SPECIFIC TARGET CYSTINE LEVEL
GranulocytesLess than 1.9 nmol 1/2 cystine/mg protein
Mixed leukocytesLess than 1.0 nmol 1/2 cystine/mg protein

How often to have cystine level tests

IF PROCYSBI IS YOUR FIRST CDT*AGEFREQUENCY OF CYSTINE LEVEL TESTING
Children from age 1 year to younger than 6 years
  • 2 weeks after starting PROCYSBI
  • Continually as long as dose adjustments are needed
  • After target cystine levels are reached, at least once a month for 3 months, then every 3 months for a year, and then at least 2 times a year
Children and adults aged 6 years and older
  • 2 weeks after reaching the recommended long-term dose
  • Continually as long as dose adjustments are needed
  • After target cystine levels are reached, at least once a month for 3 months, then every 3 months for a year, and then at least 2 times a year
IF YOU’RE SWITCHING TO PROCYSBI FROM IMMEDIATE-RELEASE CDTChildren and adults aged 1 year and older
  • 2 weeks after starting PROCYSBI
  • Continually as long as dose adjustments are needed
  • After that, every 3 months for half a year and then at least 2 times a year

Work with your healthcare team to create a schedule for cystine level tests based on your treatment history and response to PROCYSBI.

IMPORTANT SAFETY INFORMATION

PROCYSBI® (cysteamine bitartrate)
delayed-release capsules

Who should not take PROCYSBI?

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

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What should I tell my doctor before taking PROCYSBI?

Before you take PROCYSBI, tell your doctor if you:

Tell your doctor about all medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

Do not drive or operate heavy machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.

Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI? PROCYSBI can cause serious side effects, including:

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye or pain with eye movement.

The most common side effects with PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, breath odor, diarrhea, skin odor, tiredness, skin rash, headache, and problems with body salts or electrolytes.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PROCYSBI. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at 1-800-FDA-1088.

What is PROCYSBI (Pro-CIS-bee)?

PROCYSBI® (cysteamine bitartrate) delayed-release capsules is a prescription medicine used to treat a medical condition called nephropathic cystinosis, in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

IMPORTANT SAFETY INFORMATION

PROCYSBI® (cysteamine bitartrate)
delayed-release capsules

Who should not take PROCYSBI?

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

What should I tell my doctor before taking PROCYSBI?

Before you take PROCYSBI, tell your doctor if you:

Tell your doctor about all medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

Do not drive or operate heavy machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.

Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI? PROCYSBI can cause serious side effects, including:

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye or pain with eye movement.

The most common side effects with PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, breath odor, diarrhea, skin odor, tiredness, skin rash, headache, and problems with body salts or electrolytes.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PROCYSBI. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at 1-800-FDA-1088.

What is PROCYSBI (Pro-CIS-bee)?

PROCYSBI® (cysteamine bitartrate) delayed-release capsules is a prescription medicine used to treat a medical condition called nephropathic cystinosis, in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.