 Taking sapropterin (Kuvan)
Dear Patient,
Your health care provider has prescribed sapropterin to treat your phenylketonuria (PKU). This medication is a cofactor of an enzyme your body uses to break down phenylalanine. Phenylalanine is an amino acid that’s found in food and which your body is not able to break down. High levels of phenylalanine can be toxic to your nervous system. This medication activates the enzyme system to help break down phenylalanine and lower the levels in your blood. The brand name of this medication is Kuvan.
How you’ll take Kuvan
You’ll take Kuvan once per day dissolved in water or apple juice. Try to take it at about the same time each day and take it with food.
What to do if you miss a dose
If you miss a dose, take it as soon as you remember that day. If you miss a day, don’t double up doses, just skip that dose. Don’t take more than one dose each day.
What to do about side effects
Notify your health care provider if you experience side effects to this medication.
Common: headache, nausea, vomiting, throat pain, runny nose.
Less common: fever, rash, nasal congestion, abdominal pain.
What you must know about other medications
Other medications may alter this medication’s effect. Tell your health care provider if you’re taking methotrexate, levodopa, or any of the erectile dysfunction drugs sildenafil, vardenafil, or tadalafil; the dosage of this medication may need to be changed and you may require closer monitoring.
Special directions
- You must continue your dietary restrictions instituted for your PKU.
- Dissolve the tablets in 1/2 to 1 cup of water or apple juice. Stir to dissolve and drink within 15 minutes. Tablets may be crushed. It’s normal and safe to see small pieces floating on top of the mixture. If you notice any granules or pieces of the tablets in the glass, add water and drink those also to make sure that you take all of the medication. You should take this with a meal.
- Tell all of your health care providers that you have this condition and are taking this medication; adjustments may be needed with other medications.
- Store the tablets in a cool, dry place. Don’t store in a hot or humid area such as the bathroom. Keep the bottle cap tightly closed. Don’t throw away the small packet that’s in the bottle; it helps keep moisture out. The tablets may become yellow over time.
Keep in mind
- You’ll need to have blood tests before starting this medication and periodically during treatment to check the effects of this medication so any necessary dosage adjustments can be made.
- It isn’t known if this medication could affect an unborn baby. You should use contraception while you’re taking this medication. If you become pregnant while taking this medication, consult your health care provider.
- It isn’t known how this medication might affect a breastfed baby. Because of the potential for serious adverse effects on an infant, you should use another method of feeding the baby while you’re taking this medication.
- Report fever, illness, changes to your dietary phenylalanine intake, severe nausea, or vomiting.
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