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
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 TEST||TEST-SPECIFIC TARGET CYSTINE LEVEL|
|Granulocytes||Less than 1.9 nmol 1/2 cystine/mg protein|
|Mixed leukocytes||Less than 1.0 nmol 1/2 cystine/mg protein|
How often to have cystine level tests
|IF PROCYSBI IS YOUR FIRST CDT*||AGE||FREQUENCY OF CYSTINE LEVEL TESTING|
|Children from age 1 year to younger than 6 years|
|Children and adults aged 6 years and older|
|IF YOU’RE SWITCHING TO PROCYSBI FROM IMMEDIATE-RELEASE CDT||Children and adults aged 1 year and older|
Work with your healthcare team to create a schedule for cystine level tests based on your treatment history and response to PROCYSBI.