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An RT’s Helpful Tips for Taking CAYSTON® | My Cayston Community™
As a Respiratory Therapist (RT), I've worked with hundreds of people and families living with cystic fibrosis (CF). I see firsthand the realities my patients face trying to keep up with their CF treatment routine. Taking all the CF medicines you are prescribed is time consuming, and fitting multiple rounds of treatments into your day can, at times, seem nearly impossible. It's the reality you live with.
One of the reasons I chose to commit to a career in CF care was because I believed care teams could do more to support CF patients and families as they manage this reality. In my mind, that starts with providing comprehensive and effective education and training on how to take your treatments and therapies, when they are first prescribed, and even as they become a routine part of your care.
Your time is valuable. If you are going to spend time doing a treatment, shouldn’t you do all you can to make sure you’re doing it right?
I get that it may seem tedious or boring to spend time really digging into the details of your treatments, especially those that you’ve been on for a while. But, the fact is that taking time to learn about your treatments is really important, because:
- Understanding how to take them, when to take them, and what you can expect, including side effects, can help you with your treatment goals.
- A small misunderstanding in how, when, or why to take your medicines can make a big impact on how effective the treatment is for you.
- Your time is valuable. If you are going to spend time doing a treatment, shouldn’t you do all you can to make sure you’re doing it right?
I've educated and trained many people with CF and Pa lung infection over the years on how to take CAYSTON and how to properly use the ALTERA® Nebulizer System. Like other nebulized medicines, starting CAYSTON can be confusing at first. And given the number of treatments and therapies you need to take, it’s easy to forget some of the important details about taking your CAYSTON. Below is a list of common questions I ask new and “veteran” CAYSTON users so I can better understand their treatment experience and some of the most important information I can provide to help them take their medication as prescribed.
Important Questions I Ask My Patients Using CAYSTON
What you need to know: It typically takes between 2-3 minutes (not including set up, cleaning, and disinfecting time) to nebulize each dose of CAYSTON. If it takes you longer than 2-3 minutes to take your CAYSTON, it could mean that you need a new ALTERA handset or your ALTERA Nebulizer System is not functioning properly. If that’s the case, reach out to your care team or the Cayston Access Program® to help you troubleshoot any issues you’re having with your nebulizer. Also, see the manufacturer's instructions for use that comes with your ALTERA Nebulizer System. This should have complete information about how to use and care for your ALTERA.
What you need to know: Because CAYSTON needs to be taken 3 times a day, it is important to plan out when and where you might take it during the course of your day. Remember, CAYSTON needs to be taken at least 4 hours apart. This may give you some flexibility in planning your doses. For example:
Remember, to get your complete dose of CAYSTON, make sure to place the ALTERA on a flat, stable surface and sit in an upright, comfortable position while taking it. Also, keep in mind changes in your schedule between weekdays, weekends, holidays, and travel. To maintain your treatment schedule, it’s really important to plan for changes in your schedule and think about when and where you can fit in those 3 doses.
What you need to know: Being aware of what you're experiencing during and immediately after taking a dose of CAYSTON is important. It's helpful to keep a list of any side effects (eg, increased coughing, nasal congestion, wheezing) you have and share that information with your care team. You should get in touch with your care team if you have any new or worsening symptoms.
What you need to know: This is really a trick question. The ALTERA should ONLY be used with CAYSTON. Do NOT put any other medicines in your ALTERA or you could damage the aerosol head. Using other medicines in the ALTERA will also alter the way those medicines are being delivered in your body, which would make them ineffective and potentially dangerous. These medications should be taken only as prescribed by your doctor.
What you need to know: When you first get your CAYSTON shipment, put it in the refrigerator until you’re ready to use it. Once you begin your CAYSTON cycle, you can keep CAYSTON at room temperature (less than 77 °F) for the 28-day course of treatment. This means that when you’re away from home, you don’t need to worry about finding a refrigerator or keeping your CAYSTON doses in a cooler bag.
What you need to know: The proper order to take your treatments and therapies is bronchodilator, mucolytic, airway clearance treatment, and inhaled antibiotic. You should always use an inhaled antibiotic like CAYSTON after you do your airway clearance, and you should use a bronchodilator to open up your airways before you begin your treatments.
What you need to know: You will receive 2 ALTERA handsets in your first CAYSTON shipment and an additional handset in each of the following CAYSTON shipments. A different handset can be used for each of your 3 daily doses of CAYSTON and you may be able to save time by batch disinfecting your handsets at the end of every treatment day. If you need to take a dose while at school or work, you may be able to take a handset with you.
What you need to know: Batch disinfecting your handsets can save you time. It is important that you clean your ALTERA handset using soap and water after each dose of CAYSTON. If you have 3 handsets (one for use with each daily CAYSTON dose), you may choose to disinfect your handsets at the end of each treatment day. And disinfecting your handsets is the most time-consuming part of the cleaning process.
What you need to know: The first shipment of CAYSTON will usually arrive 1-2 weeks after your prescription is sent to the Specialty Pharmacy (SP). You will be responsible for working with your SP to plan for refills. You can get CAYSTON through 6 commonly used CF SPs. While each SP works a little differently, almost all have refill reminders or automatic refill programs that you can enroll in to help ensure that you get your next dose in time for your next 28-day cycle.
I've seen the positive impact and "ah-ha" moments that come from really good treatment education and training. It’s important to take all of your treatments properly. That starts with understanding the details around how to take your treatments. So if you’re taking CAYSTON and have any questions, be sure to talk to your CF care team. You can also check out this demonstration video that I helped to develop to get the information you need about taking CAYSTON, using the ALTERA, and cleaning and disinfecting your handsets.