This case represents the experience of two TOBI® (Tobramycin Inhalation Solution, USP) patients. Individual treatment results may vary. Speak to your physician to see if TOBI is right for you.
Laurie and David Share Experiences From Their Family:
We just got back from our first vacation in a long time. It was great for the kids—Enid is 17, Jeremy is 14. They were both honored at the Annual Children's Miracle Network Gala. Highlights included Jeremy's sketch being auctioned off to raise money for CF and a trip for the family to Disneyworld.
Enid and Jeremy get along very well for a brother and sister, since they do have a lot in common. They both have CF, and it's all they've ever known. We've told them, no one is going to give you a silver pass because you have CF. But we do spoil them.
About Treating:
Enid and Jeremy have been taking TOBI for a while. When they were little, they used to sit on our laps for treatments. I remember when Enid used to cough something up we had a grab bag that she could pick out a toy from. They didn't understand the importance of the treatments, so we had to do what we had to do to get them to finish.
They definitely understand the importance of treatment more now that they're older. But, we still help them as much as we can. "Daddy, set up the treatment" is something we hear almost every morning from Enid. They're both very sleepy when they do their treatments before school, since they need to get started around 5:30 in the morning. So, we have it ready for them. We find that it helps get them moving. Usually Enid watches music videos or Jeremy plays video games. Then we put all the equipment away for them.
We need to push them sometimes to do their treatments. At night, usually one of us will sit with them to keep them company, or their friends will come over and hang out with them. Enid and Jeremy have both grown up with the same friends, so they understand what's going on.
We rarely let them skip a treatment. Sometimes we'll let them skip their chores, like making their beds or putting away their laundry. But we don't let them miss a treatment of TOBI. We know how important it is.
TOBI has definitely helped both the kids. Enid isn't in the hospital as much. And while Jeremy has had his share of CF-related issues, he still spends lots of time with his sister in the pool, playing outside with friends, and drawing. Enid has been horseback riding a lot and is going to be a senior in high school. We know that eventually she'll be out in college or out on her own, so we're going to start preparing her to do her medications and treatments without our help.
Information for Patients and Caregivers
TOBI® (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. TOBI has not been studied in patients under 6 years of age, in those with a lung function outside of a certain range, or in those whose lungs contain bacteria called Burkholderia cepacia. Ask your doctor if TOBI is right for you.
IMPORTANT SAFETY INFORMATION
If you are allergic to antibiotics in the same family as TOBI (ie, aminoglycosides), you should not take TOBI. Tell your doctor before starting treatment if you have any history of hearing, kidney, balance, or muscle problems.
Patients taking TOBI may have temporary side effects like coughing or difficulty breathing.
Some people taking TOBI experienced ringing in the ears, hearing loss, or changes in
voice (hoarseness)
.
Ringing in the ears may be a warning sign for hearing loss. If you
have ringing in the ears, changes in hearing, or dizziness, you should tell your doctor.
In studies, kidney damage was not seen in patients taking TOBI. However, antibiotics in the same family as TOBI have been linked to kidney damage.
If you are pregnant, plan to become pregnant, or if you are breast-feeding, talk with your doctor before taking TOBI.
Some drugs may interact with TOBI. Discuss all medications you are taking with your doctor.
Patients with cystic fibrosis can have many symptoms. Some of these may be related to your medications. You should tell your doctor if you have new or worsening symptoms.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit
www.fda.gov/medwatch, or call 1-800-FDA-1088.
