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  • Mark treated with CAYSTON

Preparing For Your First Dose | My Cayston Community™

mark levine

I remember getting my first shipment of CAYSTON. Being prescribed a new inhaled antibiotic to help fight my Pseudomonas aeruginosa (Pa) was pretty exciting. There is always a lot to learn when you add a new treatment to your arsenal of cystic fibrosis (CF) medicines and therapies, and sometimes it can be tough to manage on your own. So, I’m sharing some important things that I’ve learned along the way that may help you as you’re getting started.

Getting Your First Shipment
  • CAYSTON is shipped directly to you by your Specialty Pharmacy. It can take a few days from the time you receive your CAYSTON prescription to the time you receive your first CAYSTON shipment. Proactively calling your CAYSTON Specialty Pharmacy to order and confirm a delivery date may help to get you started sooner.
  • The first shipment is the largest, because it includes your ALTERA® Nebulizer System in addition to the medicine, saline ampules, and an additional handset. In each subsequent shipment, you will receive 1 additional handset with CAYSTON. To learn about all of the components of your first CAYSTON shipment, watch The First Shipment video I helped to create.

Quick Tip: Save the original ALTERA box.

I do this for any new equipment that I get since the original boxes often contain the instructions for use, serial number, registration number, and warranty information, which can be important in the future.

  • Once removed from the refrigerator, CAYSTON and saline may be stored at room temperature (less than 77 °F) for up to 28 days. I usually schedule my CAYSTON shipment to arrive before I start so I automatically put all of the medicine from the shipment in the refrigerator. Then, when I’m ready to start my treatment, I pull out the 2 trays of medicine from the refrigerator and put it in a cabinet I have set aside for storing my treatments. I find that storing my medication somewhere I look every day helps me to remember to take it.
  • Have a plan for keeping your ALTERA parts dry, clean, and safe when you’re not at home. During the week, I usually take a dose of CAYSTON in my office or at the gym. One of the first things I did when I started CAYSTON was buy a plastic container to store, clean, and transport the nebulizer handset. This way, when I take CAYSTON away from home, I have a place to keep the unit dry, clean, and safe.

Quick Tip: Order a free CAYSTON carrying case online.

You can order a CAYSTON carrying case, which has helped me stay organized when I take my CAYSTON on the go. I can store everything I need to take CAYSTON during a treatment day.

  • CAYSTON nebulization time is short. It typically takes between 2-3 minutes to take each dose, which does not include time for setting up, cleaning, and disinfecting your ALTERA. At first, I was nervous that the treatment was too short. No need for concern—that’s how long it should take. Just be sure to take all 3 daily doses at least 4 hours apart for 28 days.
  • It’s important to have the proper technique. That means that when you’re doing your treatment, you want to put your ALTERA on a flat, stable surface and inhale properly. It’s also important to make sure your body is in an upright position so that you can get the medication deep into your lungs.
  • You may breathe better with CAYSTON. I find that I have fewer breathing symptoms, like coughing, wheezing, and mucus production, after taking a full 28-day course of CAYSTON. It's important that you finish the full course of treatment even if you're feeling better.
  • Batteries ARE included! You will receive four AA batteries in your first shipment, along with the ALTERA Nebulizer System. I’ve found that most batteries can last up to a month, if not longer, depending on how frequently you use the nebulizer with batteries versus using the ALTERA power cord. I am currently using rechargeable batteries to power the ALTERA, which makes it more environmentally friendly, convenient, and less expensive in the long run.
  • Take care of your ALTERA. After each treatment, it is very important to clean all of the pieces of your nebulizer handset, especially the aerosol head. Cleaning and disinfecting your ALTERA nebulizer helps to maintain your equipment, helping to ensure that CAYSTON delivery is fast and effective. If you have any issues with your ALTERA, you can contact the Cayston Access Program® at 1-877-7-CAYSTON.

Quick Tip: Hold on to your handsets and make sure they are working properly!

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, like me, you usually take a dose while at work (or school), you may be able to take a handset with you. It's also important to make sure your handsets are working properly. If it takes longer than 2-3 minutes to nebulize your CAYSTON, your ALTERA handset may not be functioning properly. If you have any issues or concerns, contact your care team or the Cayston Access Program at 1-877-7-CAYSTON.

For me, the key to success with CAYSTON is to make sure I keep up with the daily dosing schedule. Over time, I’ve found ways to maintain my discipline and stay motivated to fit in a 2- to 3-minute treatment,* 3 times a day, at least 4 hours apart. Knowing that CAYSTON may improve my breathing symptoms gives me the push I need to stay committed to taking it.

*The estimated 2- to 3-minute nebulization time does not include the time for setting up, cleaning, and disinfecting the nebulizing equipment.