Saturday, April 30, 2011


I am feeling better today. All my cold symptoms are gone and because I don't have to work today I was able to sleep in. So far my lungs feel fine, but I am still weary that I may develop and infection. I increased my Hypertonic Saline and am doing extra Flutter treatment. So fingers crossed. Now that I am feeling better I want to review Cayston. As far as I know this medicine is only used for patients that culture Pseudomonas aeruginosa. Lucky for me I have been culturing it since as long as I have known about my CF.

I started taking Cayston several months ago and I am on a 28 day on cycle followed by a 28 day off cycle. Aside from the medicine I want to talk about the convenience of it! I have been so thrilled by how easy and fast it is that I have been tempted to write the company. No joke! You do not need to put it in the nebulizer, but rather they give you an Altera nebulizer that is so small it can fit in my purse. It is equally light. It is also extremely in silent!

The medicine has to be premixed prior to use, but even this is not a big deal because unlike other mixed meds (i.e. Colistin) it takes only second to mix. Another nice aspect is that even though the medicine needs to be refrigerated it can be out of the fridge for 28 days. I usually keep a weeks worth out of the fridge and in a convenient spot. The medicine does need to be used 3 times a day which can seem like a pain and I was a little worried about it before I started, but here it THE BEST part. It takes only about 2 minutes start to finish!!! This means that days I am running late I simply take it in the car with me. If I will be busy after work, I bring it in my work bag and take it in the bathroom during my lunch break.

I am not a good scientist and so it is hard for me to accurately review this medicine. I started Cayston simultaneously to other meds/treatments because I was at a point in my life that I wanted to fight CF hard core and felt what I was doing wasn't working well. Because I started so many new treatments at once I am not sure what to contribute my better health to, but I am not willing to stop any to determine its effectiveness. I like feeling good too much. Anyway, since staring my Cayston (plus other medicine) treatment I have had a huge difference in my mucus. Again this may be contributed to many factors, but I do believe Cayston has a large part in my health. I have always had issues with keeping my bacteria levels down. This can be determined by the color of mucus. The more green/thicker the more out of control an infection is. The dark green days are completely gone and I have not seen my old mucus in several months! I used to deal with green mucus all the time with the exception of being on IVs or oral abx, but without orals or IVs I have seen the same light yellow that I love seeing so much. Also, I do feel better on Cayston months than on Colistin months, but the difference is slight.

Lastly, taking care of your Altera is SO important. When I fist started I simply boiled all pieces and called it a day because that is how I take care of my other nebs. I then read that the metal head should be soaked in alcohol in order to keep it clean and working more effectively. It makes such a difference!! If I don't soak them the treatment time gets longer and longer. By soaking, the treatment time remains around 2 minutes. It is so worth my time to throw the heads in 70% alcohol and have shorter treatment times.

This is a really long post so if you are still reading then good for you! Talk to your Dr about Cayston if you cutlure the lovely Pseudomonas. I don't think they know the benefits of Cayston on kids under 7 or CFers with PFTs below 25% (I figure it can't hurt at that point can it?) or PFT over 75% (so wish I was one of those CFers), but for everyone else it is worth asking your Dr.

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