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Information for Patients & Caregivers
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Eating Low-Phe on the Go

PKU goes to school

Independence. It means you're getting ready to take charge of your life. It also means that you're making more and more of your own decisions, including some about how to manage your PKU.

However, your commitment to a low-Phe diet must remain a priority. KUVAN is a prescription medication taken once a day in addition to your low-Phe diet and may help you stay on top of your Phe levels, no matter how busy your life gets.

If you are a teen at school, and cannot (or would just prefer not to) bring your own lunch to school, keeping your Phe levels under control can be done. All it takes is a little pre-planning. Before the school year begins, you and your parents should meet with the food staff. Tell them about PKU. Bring the low-protein food list, cookbooks, formula, low-protein foods, and a sample PKU diet diary to the meeting. With these materials, the food staff can help you determine what foods you are able to eat and when they are available.

Travel tips

Whether you're traveling across town for a football game or traveling for business or planning a vacation, these travel tips may come in handy.
  • Pack your medical foods and KUVAN tablets in your carry-on bag, along with a doctor's note for both
  • Bring a cooler with ice to keep your Phe-formula cold during short-distance trips
  • Find out as much as possible about the place you're visiting, especially if it's a foreign destination. How clean and safe is the water? Will you be able to keep your formula cold?
  • Stay in hotels with a microwave and fridge. That way you can alternate between eating meals out and having some "homemade" meals in your room
  • For longer stays, find out where you can buy your low-Phe foods in the area
Find a PKU Friend

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.
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