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Diagnosed with pseudomonas aeruginosa infection in my lungs
MAC & Bronchiectasis | Last Active: Jun 27 9:33pm | Replies (85)Comment receiving replies
@irenea8 I have bronchiectasis. I have had pseudomonas aeruginosa for several years. The PA doesn’t always show up in sputum cultures but it has enough times that most antibiotics I have taken don’t completely get rid of it. The oral antibiotics I have tried in the last four years are Cipro, Levaquin, Bactrim and Augmentin. IV antibiotics included Cefapime twice a day for 28 days (but 3 weeks in I developed a rash so had to stop) and Meropenem, 3 times a day for 28 days. I used nebulized Tobramycin for 19 months (2 weeks on, 2 weeks off). Tobi was hard to tolerate so was changed to Cayston, 2 weeks on, 2 weeks off. And yes it was very expensive. Medicare considers it a tier 5 specialty drug and has to be obtained through a specialty pharmacy. My secondary insurance approved it, but my copay was awful. I used Cayston for 9 months but it was so expensive and towards the end of the 9 months it wasn’t helping so I went back to Tobramycin for 4 months. After that and currently, I have been taking nebulized Colistin (for 11 months). It is twice daily. It has helped the most of anything recently. I am coughing a lot less, and cough up very little sputum. I would like to add that my regimen for the last four years include a compound nose spray, Advair 500, sodium chloride 7% or 3%, airway clearance vest (all of those 2 times a day). I also attend pulmonary rehab 3 times a week. I have been under the care of the same Mayo Clinic pulmonologist for 18 years. My first appointment there I was diagnosed with MAC and went through the 3 drug treatment, followed by 3 rotating antibiotics. I have had no MAC show up in sputum cultures since ending treatment. This may be more information than you were after, but felt it necessary to lead up to taking Cayston. Good luck with your treatment.
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Thank you so much for taking the time to answer. I am amazed when i read about people who are able to take so many antibiotics! I am thinking you must be younger with fewer co morbidities than myself. I have had Bronchiectasis for a long time since around 2000 and I am 71. But I also have chronic long standing intestinal issues and also possibly kidney and heart issues that are undiagnosed. I recently (March) found out I have Chronic Pseudomonas (mucoid strain found). The only antibiotics I have ever used are Augmentin twice and in August tried inhaled Toby but only got through 5 treatments due to side effects! My main issue each time is that I stop urinating enough. Out of all the options to try inhaled Cayston seemed the least likely to have that effect (reading about it). But I know I would not be able to use it ongoing. I was hoping that a couple of weeks of it would at least knock things back. From what I am reading and from studies it seems that it does not help NCFB as much. Did you find it helpful at first? Did you have side effects with it? Also curious about the Meropenem. Did that help at all? It is supposed to be relatively safe for kidney issues. And the Colistin studies show it helps NCFB with Pseudomonas the most. But I thought it was not approved by the FDA and has very bad side effects. What have you experienced with it? All I do is nebulize saline 7% twice a day followed by Aerobika and nebulized Glutathione a few times a week. I recently started trying PulmoSal saline which is supposed to be less acidic and therefore help to reduce Pseudomonas better. So far it seems good. And I started using the Aerobika not just sitting but also laying on my back and sides. That has made a big difference. Thanks again and anything more about the Cayston or Meropenem or Colistin would be appreciated. Need to read up on Bactrim but curious about it too.