UCD Patient Videos

You may have a rare condition, but you're not alone.

Are you feeling that family and friends don't understand what it's like to live with a urea cycle disorder (UCD)? We can help you connect with patients and families who have been there. If you'd like to talk with another UCD patient or caregiver, sign up to speak with one of our UCD Mentors. Watch the videos below to learn from others living with urea cycle disorders. Learn about starting RAVICTI® (glycerol phenylbutyrate) Oral Liquid, how RAVICTI works, and how to take RAVICTI. There are also real life stories from UCD patients and caregivers and introductions to our UCD Mentors.

RAVICTI is for long-term management of high levels of ammonia in the blood (hyperammonemia) caused by a urea cycle disorder. RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements. RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crises) in people with UCDs as they may require rapidly acting medication. It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Taking RAVICTI by Mouth

RAVICTI can be taken by mouth, even in patients with a feeding tube or g-tube.

Read transcript

Welcome to the RAVICTI® (glycerol phenylbutyrate) Oral Liquid instructional dosing video.

In this video you will see step-by-step instructions for the oral administration of RAVICTI for you or your child.

Approved Uses for RAVICTI® (glycerol phenylbutyrate) Oral Liquid

RAVICTI is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases, dietary supplements.

RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) in people with UCDs.

It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

Please listen to the RAVICTI Important Safety Information at the end of this video. For additional important safety information, see the Full Prescribing Information and Medication Guide at RAVICTI.com and discuss with your doctor.

This video is intended to complement the instructions you have already received from your doctor. Always take RAVICTI exactly as directed by your doctor.

Do not mix RAVICTI with formula or any other liquids.

Now, let’s get started.

Your RAVICTI shipment includes a 25-mL bottle of RAVICTI, a blue AdaptaCap® Bottle Adapter, and an oral dosing syringe.

When dosing RAVICTI, be sure to use the oral dosing syringe provided with the product.

First, remove the childproof cap on the RAVICTI bottle. To do that, push down on the cap while twisting it to the left.

Then, attach the blue AdaptaCap® Bottle Adapter onto the bottle. Put it on top of the bottle and twist it to the right.

Make sure it is secured tightly on the bottle.

While holding the RAVICTI bottle securely, place the tip of the oral dosing syringe into the AdaptaCap® Bottle Adapter.

Turn the bottle upside down with the oral dosing syringe still inserted.

Now you’re ready to fill the oral dosing syringe with RAVICTI.

Get the medicine into the oral dosing syringe by pulling the plunger back slowly. Pulling slowly will help avoid large air bubbles from forming in the medicine.

Pull the plunger back until the first line of the black rubber stopper is even with the dosing mark. The dosing marks are on the barrel of the oral dosing syringe. Match the dosing mark with the amount of medicine prescribed by your doctor.

Then, turn the bottle upright again.

If there are large air bubbles, push the medicine back into the bottle. Do this slowly.

Then draw up the medicine again.

Once you have your oral dosing syringe ready, place it into the mouth. Push the plunger to squirt the medicine directly into the mouth.

Make sure all of the medicine is pushed out of the oral dosing syringe and swallowed.

Put the cap on the oral dosing syringe.

Drink liquid or eat some food right after taking RAVICTI.

This helps ensure that all of the medicine is swallowed.

Close the tab on the AdaptaCap® Bottle Adapter.

Make sure it’s closed tightly.

You can use 1 oral dosing syringe and 1 blue AdaptaCap® Bottle Adapter for all doses each day. You can also choose to use a new oral dosing syringe with each dose. Do not rinse the AdaptaCap® Bottle Adapter or oral dosing syringe between doses.

After the last dose of the day, dispose of the oral dosing syringe.

If you take too much RAVICTI, call your doctor or go to the nearest hospital emergency room right away.

You should consult your physician if you have missed a dose of RAVICTI.

Do not mix RAVICTI with formula or any other liquids.

IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.

Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

  • sleepiness
  • lightheadedness
  • change in taste
  • problems with hearing
  • confusion
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet  
  • headache 
  • feeling very tired (fatigue) 
  • nausea 
  • vomiting

Who should not take RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience any of the following symptoms of an allergic reaction while taking RAVICTI:

  • wheezing
  • shortness of breath
  • cough
  • low blood pressure
  • flushing
  • nausea
  • skin rash

What should I tell my doctor before taking RAVICTI?

Tell your doctor about any medical conditions and if you:

  • Have liver or kidney problems. 
  • Have pancreas or bowel (intestine) problems. 
  • Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. 
    • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
  • Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.
     

What are possible side effects of RAVICTI?

RAVICTI may cause serious side effects, including:

  • See What is the most important information I should know about RAVICTI?

The most common side effects of RAVICTI in adults include:

  • diarrhea
  • gas
  • headache
  • abdomen (stomach) pain
  • vomiting
  • tiredness
  • decreased appetite
  • indigestion or heartburn

The most common side effects of RAVICTI in children 2 years to 17 years of age include:

      • upper abdomen (stomach) pain
      • rash
      • nausea
      • vomiting
      • diarrhea
      • decreased appetite
      • headache

The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

      • low white blood cell count (neutropenia)
      • vomiting
      • diarrhea
      • fever
      • reduced food intake
      • cough
      • stuffy nose
      • runny nose
      • skin rash
      • small round bumps on the skin

The most common side effects of RAVICTI in children less than 2 months of age include:

      • vomiting
      • rash
      • gastroesophageal reflux
      • increased levels of liver enzymes in the blood
      • decreased appetite and reduced food intake
      • low red blood cell count (anemia)
      • cough
      • loss of too much body fluid (dehydration)
      • too much acid in the blood (acidosis)
      • high blood platelet count (thrombocytosis)
      • low blood platelet count (thrombocytopenia)
      • low blood neutrophil count (type of white blood cell) (neutropenia)
      • high white blood cell count (lymphocytosis)
      • diarrhea
      • gas
      • constipation
      • fever
      • drowsiness (lethargy)
      • irritability
      • agitation

These are not all of the possible side effects of RAVICTI.  Call your doctor for medical advice about side effects.

For additional important safety information, please see the Full Prescribing Information and Medication Guide available at RAVICTI.com and discuss with your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

APPROVED USES and IMPORTANT SAFETY INFORMATION for RAVICTI

What is the most important safety information I should know about RAVICTI? RAVICTI may cause serious side effects, including: Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.

What is RAVICTI?

RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases, dietary supplements.

RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) in people with UCDs.

It is not known if RAVICTI is safe and effective for the treatment ofN-acetylglutamate synthase (NAGS) deficiency.

IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about RAVICTI?

RAVICTI may cause serious side effects, including:

Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.

Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

  • sleepiness
  • lightheadedness
  • change in taste
  • problems with hearing
  • confusion
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • headache
  • feeling very tired (fatigue)
  • nausea
  • vomiting

Who should not take RAVICTI?

Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience any of the following symptoms of an allergic reaction while taking RAVICTI:

  • wheezing
  • shortness of breath
  • cough
  • low blood pressure
  • flushing
  • nausea
  • skin rash

What should I tell my doctor before taking RAVICTI?

Tell your doctor about any medical conditions and if you:

  • Have liver or kidney problems.
    • Have pancreas or bowel (intestine) problems.
      • Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby.
        • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
      • Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

        What are possible side effects of RAVICTI?

        RAVICTI may cause serious side effects, including:

        • See "What is the most important information I should know about RAVICTI?"

        The most common side effects of RAVICTI in adults include:

        • diarrhea
        • gas
        • headache
        • abdomen (stomach) pain
        • vomiting
        • tiredness
        • decreased appetite
        • indigestion or heartburn

        The most common side effects of RAVICTI in children 2 years to 17 years of age include:

        • upper abdomen (stomach) pain
        • rash
        • nausea
        • vomiting
        • diarrhea
        • decreased appetite
        • headache

        The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

        • low white blood cell count (neutropenia)
        • vomiting
        • diarrhea
        • fever
        • reduced food intake
        • cough
        • stuffy nose
        • runny nose
        • skin rash
        • small round bumps on the skin

        The most common side effects of RAVICTI in children less than 2 months of age include:

        • vomiting
        • rash
        • gastroesophageal reflux
        • increased levels of liver enzymes in the blood
        • decreased appetite and reduced food intake
        • low red blood cell count (anemia)
        • cough
        • loss of too much body fluid (dehydration)
        • too much acid in the blood (acidosis)
        • high blood platelet count (thrombocytosis)
        • low blood platelet count (thrombocytopenia)
        • low blood neutrophil count (type of white blood cell) (neutropenia)
        • high white blood cell count (lymphocytosis)
        • diarrhea
        • gas
        • constipation
        • fever
        • drowsiness (lethargy)
        • irritability
        • agitation

        These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

        For additional important safety information, click here for the Full Prescribing Information and Medication Guide and discuss with your doctor.

        You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

        APPROVED USES and IMPORTANT SAFETY INFORMATION for RAVICTI

        What is the most important safety information I should know about RAVICTI? RAVICTI may cause serious side effects, including: Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.

        What is RAVICTI?

        RAVICTI (glycerol phenylbutyrate) Oral Liquid is a prescription medicine used for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and in some cases, dietary supplements.

        RAVICTI is not used to treat extremely high levels of ammonia in the blood (hyperammonemic crisis) in people with UCDs.

        It is not known if RAVICTI is safe and effective for the treatment ofN-acetylglutamate synthase (NAGS) deficiency.

        IMPORTANT SAFETY INFORMATION

        What is the most important safety information I should know about RAVICTI?

        RAVICTI may cause serious side effects, including:

        Nervous system side effects (Neurotoxicity). The breakdown of RAVICTI produces the byproduct phenylacetate (PAA), which may cause nervous system side effects.

        Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:

        • sleepiness
        • lightheadedness
        • change in taste
        • problems with hearing
        • confusion
        • problems with memory
        • worsening of numbness, tingling, or burning in your hands or feet
        • headache
        • feeling very tired (fatigue)
        • nausea
        • vomiting

        Who should not take RAVICTI?

        Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience any of the following symptoms of an allergic reaction while taking RAVICTI:

        • wheezing
        • shortness of breath
        • cough
        • low blood pressure
        • flushing
        • nausea
        • skin rash

        What should I tell my doctor before taking RAVICTI?

        Tell your doctor about any medical conditions and if you:

        • Have liver or kidney problems.
          • Have pancreas or bowel (intestine) problems.
            • Are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby.
              • Pregnancy Registry: There is a Pregnancy Registry for women who take RAVICTI just before becoming pregnant or who become pregnant during treatment with RAVICTI. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can join the Pregnancy Registry. For more information about this registry, call 1-855-823-2595 or visit www.ucdregistry.com.
            • Are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. Breastfeeding is not recommended during treatment with RAVICTI. Talk to your doctor about the best way to feed your baby if you take RAVICTI.

              What are possible side effects of RAVICTI?

              RAVICTI may cause serious side effects, including:

              • See "What is the most important information I should know about RAVICTI?"

              The most common side effects of RAVICTI in adults include:

              • diarrhea
              • gas
              • headache
              • abdomen (stomach) pain
              • vomiting
              • tiredness
              • decreased appetite
              • indigestion or heartburn

              The most common side effects of RAVICTI in children 2 years to 17 years of age include:

              • upper abdomen (stomach) pain
              • rash
              • nausea
              • vomiting
              • diarrhea
              • decreased appetite
              • headache

              The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:

              • low white blood cell count (neutropenia)
              • vomiting
              • diarrhea
              • fever
              • reduced food intake
              • cough
              • stuffy nose
              • runny nose
              • skin rash
              • small round bumps on the skin

              The most common side effects of RAVICTI in children less than 2 months of age include:

              • vomiting
              • rash
              • gastroesophageal reflux
              • increased levels of liver enzymes in the blood
              • decreased appetite and reduced food intake
              • low red blood cell count (anemia)
              • cough
              • loss of too much body fluid (dehydration)
              • too much acid in the blood (acidosis)
              • high blood platelet count (thrombocytosis)
              • low blood platelet count (thrombocytopenia)
              • low blood neutrophil count (type of white blood cell) (neutropenia)
              • high white blood cell count (lymphocytosis)
              • diarrhea
              • gas
              • constipation
              • fever
              • drowsiness (lethargy)
              • irritability
              • agitation

              These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

              For additional important safety information, click here for the Full Prescribing Information and Medication Guide and discuss with your doctor.

              You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.