How a Phe-Restricted Diet Can Help You
Food Management
Travel Tips
Find a PKU Partner
Phe and Pregnancy

Research has shown that adults who stay on diet do better in a wide range of areas than those who don’t stay on the Phe-restricted diet. Specifically, adults on a Phe-restricted diet are more likely than those off diet to:

  • Graduate with an advanced degree
  • Belong to a higher socioeconomic class

Likewise, adults who stay on diet are less likely than those off diet to:

  • Have mental problems, such as phobias, panic attacks, and depression
  • Experience recurrent headaches
  • Have attentional deficiencies
  • Experience slower thinking

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Cooking at home

Finding time to make homemade meals can be difficult, especially when your workday ends long past 5 PM. So, you might want to devote one day of the week to cook all of your meals for the entire week. A little up-front work makes the rest of the week’s meals quick and easy.

Divide—and conquer

Conquer the urge to splurge by having your low-Phe food within easy reach:

  • Divide the freshly prepared food into appropriate portion sizes. Store individual servings in plastic containers.
  • Freeze these portions for quick, microwaveable meals during the week.
  • Don’t forget breakfast. Premeasure your favorite cereal, then store it in plastic sandwich bags for quick breakfasts throughout the week.

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Plan ahead

Whether you’re traveling for business or planning a vacation, these travel tips may come in handy:

  • Pack your Phe-free formula 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 with clients and having some “homemade” meals in your room.
  • For longer stays, find out where you can buy your low-Phe foods in the area.

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Support is near

Even with all the tips and helpful advice, you may still find yourself struggling with your diet once in a while. That’s when a PKU partner can help. Chances are he or she has experienced the same things as you. This person can give you support and encouragement to help motivate you to stay on diet.

You can find your PKU partner by visiting any of the PKU Web sites listed in the Support section. Log on and share your stories with adults just like you. Who knows? The support and encouragement you and your PKU partner give each other may make a big difference in both your lives!

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Motherhood on your mind?

Staying on a Phe-restricted diet is a must, especially if you’re thinking of becoming a mom. Talk to your doctor before you actively try to have a baby.

Staying on a Phe-restricted diet before and during your pregnancy will help you have a healthy baby by reducing the risk of mental retardation and other birth defects. You will feel better if you stay on diet after your pregnancy. When you feel well, you can take better care of your newborn.

Not ready for motherhood?

Stay on your diet and talk with your doctor about using appropriate birth control.

KUVAN and pregnancy

Currently, there are no well-controlled studies of KUVAN use during pregnancy. For that reason, KUVAN should be used during pregnancy only if clearly needed. Furthermore, it is not known if KUVAN is present in the milk of mothers who are breast-feeding and taking KUVAN.

Pregnant women taking KUVAN should enroll in the PKU Demographics, Outcomes, and Safety (PKUDOS) registry.

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Indication

KUVAN® (sapropterin dihydrochloride) Tablets is approved to reduce blood Phe levels in patients with hyperphenylalaninemia (HPA) due to tetrahydrobiopterin- (BH4-) responsive Phenylketonuria (PKU). KUVAN is to be used with a Phe-restricted 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 and may adjust your diet 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.

BIOMARIN