Monday, May 21, 2012

Cayston (Aztreonan for inhalation): My Experience

Cayston

 Cayston was approved (Gilead News Release) in the United States for treatment of chronic Pseudomonas Areuginosa infections in patients with Cystic Fibrosis in February 2010. My first dose of Cayston was July 3, 2010. This is a short blog entry about my experience with Cayston.

Brief Background

I have cultured Pseudomonas Areuginosa since 1996. When I first began to culture Pseudomonas there was not (yet) an FDA approved inhaled antibiotic available to CF patients. In December 1997 Tobi (inhaled Tobramycin) was FDA approved to treat CF lung infections caused by Pseudomonas. It would take 13 long years before a second inhaled antibiotic would be approved for CF related Pseudomonas infections. In February 2010 CF patients were finally able to breathe a sigh of relief after Cayston was finally approved by the FDA.


Personal Experience with Cayston

 I have ran a chronic low grade fever since August 2009, but I can remember waking up with a fever as far back as March 2009. My lung function (PFTs) were great. According to my doctors I looked great. But I felt awful. After complaining about increasing symptoms of a CF exacerbation my CF doctor prescribed me Cayston in July 2010. Within a few days of starting Cayston my fever subsided and I began to feel better. My airways began to open back up (a sign that the inflammation was improving in my airways), my energy increased, my appetite increased, and after months of feeling terrible I felt good. I was gaining strength by the day and felt like I was finally making progress. After my 28 days of Cayston were over my symptoms of fever, shortness of breath, fatigue, and decreased appetite returned. It would be several months before I would use Cayston again. But when I used Cayston (this time during a hospitalization for a pulmonary exacerbation) I once again felt relief from the symptoms of chronic infection that was plaguing my tiny body. I was prescribed and used Cayston three times in the year 2011 each time with improvement of my pulmonary status.  

2012

In mid-April of 2012 I was once again prescribed Cayston and instructed to cycle it ever other month. Yesterday was my 28th day of treatment with Cayston and I managed to stay out of the hospital the full 28 days which is an accomplishment for me these days. I only experience one mild episode of hemoptysis (link to my blog on my experience with hemoptysis) during this cycle of Cayston. During my April-May 2012 cycle of Cayston my chronic fever was alleviated, my appetite improved which lead to a 6 lb weight gain, my energy increased, my heart rate decreased (my heart rate increases due to infection and difficulty breathing, my oxygen sats remained stable, and my quality of life improved.


In Closing

I used my iPhone calendar to remind me 28 days from my last dose of my Cayston to restart Cayston to ensure that I do not miss a single day that I could be on the medication. I believe Cayston is a wonderful addition to the standard prescribed therapies for those of us living with CF and colonized with Pseudomonas Areuginosa infections. Click here to learn about the Pseudomonas Genome Database.

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