Managing CF

Proactively managing your CF


Here are some helpful tips on how to stay ahead of cystic fibrosis (CF):

  • Eating a high-calorie, high-fat diet is important to help make sure you are getting the nutrients you need from food

  • Exercise as often as you can to help manage lung function

  • Partner with your CF Care Team to come up with a treatment routine that works best for you

  • Make time every day for your Pulmozyme and other CF treatments

Everyone has something they enjoy doing. Stacy Motenko loves staying active and cooking. Watch the video below to see how Stacy balances her time and manages her CF.

The Cystic Fibrosis Foundation Guidelines recommend regular visits to your child's primary doctor and CF Care Center so they can help you manage your child's CF.

Supporting your child 5 years of age and older with CF

It’s important to help your child develop healthy ways of dealing with any problems they may have. Here are some ways you can help:

  • Listen to your child – They are experiencing a lot of different emotions and may need someone to talk to. Let them know you’re there to help them work through any feelings they may be having
  • Create a safe place – Older children may begin to feel pressured to fit in with their friends at school. You can help by making your home as comfortable as possible. Encourage the rest of your family, including siblings, to be supportive as well
  • Make sure to have some fun – You and your child are dealing with a busy schedule, so it’s important that you both have time for fun activities. Set aside some time each week to go to the park or cook a special dinner together

While clinical trial data are limited in pediatric patients younger than 5 years of age, the use of Pulmozyme should be considered for pediatric CF patients who may experience potential benefit in pulmonary function or who may be at risk of lung infection.

Read about financial support that is available for Pulmozyme ›

Indication and Usage

Pulmozyme (dornase alfa) is indicated for daily administration along with standard therapies for the management of cystic fibrosis (CF) patients to improve pulmonary function.

In CF patients with an FVC ≥ 40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring injectable antibiotics.

Important Safety Information

Pulmozyme should not be used in patients who are allergic to any of its ingredients.

Patients may experience the following when using Pulmozyme: change in or loss of their voice, discomfort in the throat, rash, chest pain, red watery eyes, runny nose, lowering of lung function, fever, indigestion, and shortness of breath. There have been no reports of severe allergic reactions caused by the administration of Pulmozyme. Mild to moderate hives and mild skin rash have been observed and have been short-lived.

Pediatric Use

The safety and effectiveness of Pulmozyme have been established in patients 5 years of age and older. While clinical trial data are limited in patients younger than 5 years of age, the use of Pulmozyme should be considered for pediatric CF patients who may experience potential benefit in lung function or who may be at risk of respiratory tract infection.

The safety of Pulmozyme given by daily inhalation for 2 weeks has been studied using 98 CF patients with 65 of them aged 3 months to <5 years (younger group) and 33 aged 5 years to <10 years (older group). The PARI BABY™ reusable nebulizer (which uses a face mask instead of a mouthpiece) was used in patients who were unable to show that they could breathe in or out using their mouth throughout the entire treatment period. Overall, the kind of side effects observed in children was similar to those seen in larger trials in older patients.

You are encouraged to report side effects to Genentech and the FDA. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555.

For further information, please see the full Pulmozyme Prescribing Information. If you have questions, please discuss them with your CF Care Team.