Diagnosed with pseudomonas aeruginosa infection in my lungs

I have had my ID doctor go completely silent when I asked his opinion on use of an herbal lung tincture. That was in June. After that I wanted a second opinion but all the ID doctors here trained at the same University Medical School.

I feel now I need to move but that is a huge task I can't do

Perhaps someone here can let me know what treatments all of yall have access too.

I am worried I will die long before I would if my physician were available and willing to talk with me openly.

Wow I was told after I couldn't take Levaquin. Then one IV med. Then he put me on Tobramycin nebulized. He said this is the last medication I will take till I die.

I so need to move closer to better care but this task is more than I can do.

rOnald could you provide more information about this post? I have chronic Pseudomonas but thus far cannot tolerate antibiotics. I see your post is from 2020 so not sure you are still following this. Thanks

Has anyone tried Cayston instead of Toby (inhalation). And did it help and what if any side effects?

Hello Irene, Cayston is currently approved for Cystic Fibrosis patients, and classified as a specialty drug. There were clinical trials using Cayston in patients with bronchiectasis, but I think they were inconclusive as to whether the results were good enough to justify the side effects. So as of now, it would probably be managed by doctors and insurance as an "off label use" for those who standard treatments did not help.
Here is a report of one trial that reports the type and frequency of side effects. A list of the abbreviations is at the end of the article so you can figure out what it all means. Sorry I couldn't find a report in layman's language that we could all understand more easily!
cayston-use-in-bronchiectasis-not-related-to-cystic-fibrosis-ncfb-.pdf

Has a doctor suggested you try Cayston? Maybe you will be the first in this group and can share your experience with us!
Sue

Thank you Sue, Yes i know it is not approved for NCFB. But i wondered if anyone with Pseudomonas (NCFB) had tried it and what was their experience. Probably no one will report trying it since it is so expensive (hugely expensive) and Medicare probably will not approve it for NCFB. My Dr said 50% of the time they will approve it. I currently do not have part D anyway so i would have to pay out of pocket. It would be a big gamble. I tried Toby but had to stop it after just 5 doses.

If you are curious about use and side effects, you might check into one of the CF blogs and ask there?
Sue

Yes I am still practicing integrated medicine

@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.

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.