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Information for Patients & Caregivers
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Things to Know

Managing PKU

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Low-Phe for Life

Phe control—it's a lifelong goal

Most young people with PKU learn how to manage a low-Phe diet with the help of their doctor, dietitian, parents, and other family members. But sticking to a low-Phe diet may become harder once you are older and more independent.

Where do YOU fit in?

Surveys have shown that nearly 80% of teenagers with PKU fail to keep their Phe levels within the recommended range.19

Your doctor has probably stressed that keeping your Phe levels low is an important way to help avoid problems with brain function. In fact, studies prove that PKU patients who keep lifelong control of their Phe levels do better in school and have fewer mental and physical problems.18

Could it be more than just a bad mood?

Unlike some childhood health problems, PKU is not something you outgrow. As an adult with PKU, you must continue to protect your health and brain function. When Phe levels are controlled, it's easier to think quickly and clearly. In contrast, high Phe levels can cause a person with PKU to feel sad, anxious, and confused.

Over time, high Phe can lower your IQ. You could have problems finishing school or holding a job. To see if high Phe levels are affecting you, ask yourself the following questions:


Do I often have problems concentrating, solving problems, or finishing tasks? YES  NO
Do I sometimes feel foggy or forgetful? YES  NO
Am I often in a bad mood or crabby? YES  NO
Do I often feel anxious or depressed? YES  NO
Am I afraid to be around people? YES  NO

If you can answer "yes" to one or more questions, it may be a sign that your Phe levels are too high.

Take control of your PKU

Don't let PKU hold you back! People with PKU can have great success in life—especially if they keep their Phe levels in control.
Diet & KUVAN

Indication

KUVAN® (sapropterin dihydrochloride) Tablets are approved to reduce blood Phe levels in patients with hyperphenylalaninemia (HPA) due to tetrahydrobiopterin- (BH4-) responsive Phenylketonuria (PKU). KUVAN is to be used in conjunction with a low-Phe diet.

Important Safety Information

High blood Phe levels are toxic to the brain and can lead to lower intelligence and decrease in the ability to focus, remember and organize information. Any change you make to your diet may impact your blood Phe level. Follow your doctor's instructions carefully. Your doctor and dietitian will continue to monitor your diet and blood Phe levels throughout your treatment with KUVAN.

If you have a fever, or if you are sick, your Phe level may go up. Tell your doctor and dietitian as soon as possible so they can see if they have to adjust your treatment to help keep your blood Phe levels in the desired range.

KUVAN is a prescription medicine and should not be taken by people who are allergic to any of its ingredients. Tell your doctor if you have ever had liver or kidney problems, are nursing or pregnant or may become pregnant, have poor nutrition or are anorexic. Your doctor will decide if KUVAN is right for you. Tell your doctor about all the medicines you take.

The most common side effects reported when using KUVAN are headache, diarrhea, abdominal pain, upper respiratory tract infection (like a cold), throat pain, vomiting, and nausea.

To report SUSPECTED ADVERSE REACTIONS, contact BioMarin Pharmaceutical Inc. at 1-866-906-6100, or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Please read the full Patient Information by clicking here.


This site is intended for use by U.S. residents only.

KUVAN® is a registered trademark of BioMarin Pharmaceutical Inc. Developed in collaboration with Asubio Pharma Co., Ltd.
©2010 BioMarin Pharmaceutical Inc. All rights reserved.