As a person with cystic fibrosis (CF) or as a caregiver, there is a lot to manage on a day-to-day basis. Here are some tips that may help you.
- Since the recommended dose of ORKAMBI is 2 tablets every 12 hours taken with fat-containing food, you may find it easier if your dosing schedule is the same time as when you eat breakfast or dinner
- Your dose may be different. Always take ORKAMBI exactly as your healthcare provider tells you to take it
- Set reminders on an alarm clock or phone (yours or the person's you care for) as a way to remember that it’s time to take ORKAMBI
- Be sure you always have easy-to-grab fat-containing foods on hand. It is important to take ORKAMBI with fat-containing foods
- If the person you care for takes ORKAMBI at school, make sure he or she takes fat-containing foods to school or to afterschool activities
- Young adults away at college can install a mini-fridge in the dorm room to store foods like whole-milk yogurt and cheese that need to be kept cool
- Cook large portions of fat-containing food ahead of time so you can have leftovers for lunch or freeze in individual portions to eat later
Work with your child’s school nurse
If you have a child with CF taking ORKAMBI, make sure the nurse at your child’s school knows that your child has CF and is familiar with your child’s daily medications, as well as any physical and dietary needs.
A note about children and swallowing pills
Some children have difficulty swallowing pills. The good news is that with a little help, your child can learn how to swallow pills more easily. Ask the healthcare providers at your child's CF Center for any helpful suggestions they may have.
Liver function tests
High liver enzymes in the blood, which can be a sign of liver injury, have been reported in patients receiving ORKAMBI. Your doctor will do blood tests to check your liver:
- before you start ORKAMBI
- every 3 months during your first year of taking ORKAMBI
- every year while you are taking ORKAMBI
Call your doctor right away if you have any of the following symptoms of liver problems:
- pain or discomfort in the upper right stomach (abdominal) area
- yellowing of your skin or the white part of your eyes
- loss of appetite
- nausea or vomiting
- dark, amber-colored urine
Blood pressure monitoring
An increase in blood pressure has been seen in some patients treated with ORKAMBI. Your doctor should monitor your blood pressure during treatment with ORKAMBI.
As the holidays approach, don’t forget to fill your prescription!
Keep in mind that pharmacies may have limited hours and delivery schedules during the holidays. Don’t forget to plan ahead to make sure you have enough medicine on hand.