Have Bronchiectasis, recently diagnosed with pseudomonas

Unfortunately the only oral antibiotics for Pseudomonas are Cipro or Levofloxacin. And the only nebulized is Toby or sometimes you hear of people using Colistin. There is also Cayston but unless you have CF it is unlikely medicare will approve it and it is super expensive. Otherwise the only options are a number of IV antibiotics according to sputum sensitivity testing. As far as I know you have to start the IV option in the hospital and then if you do ok continue at home. Pseudomonas is hard to get rid of. Mine is the chronic form now. I may have had it for a long time or I may have developed it after a 4 week use of Augmentin. I often hear of people being diagnosed with it after long use of an antibiotic.

In June my lab results showed "moderate Pseudomonas aeruginosa." My sputum continues to be the same...either clear or very light yellow. And, my cough is just the same as ever. My dr. said it would be treated if symptoms got worse. But, at this point, since I am stable, no treatment is warranted. I don't like that those bugs are in my lungs but, at least they aren't creating havoc.

Hi meghan13. I can totally sympathize with what you're going through. I've been diagnosed off and on with pseudomonas for 4 1/2 years. I believe it is in a chronic stage now. I also have MAC and Bronchiectasis. I have also inhaled Tobramycin off and on during that period. Early this year I was really struggling with heavy coughing, fatigue and inability to gain any weight. I contacted my doctor by portal message but he was out on paternity leave. The doctor covering for him actually called me and said to stop the Toby and called in a 10 day Rx for Cipro 750 mg 3 times a day. The next day I had red circular place come up on my left calf and red spots on my right shin bone. My dermatologist saw me that same day and said it is an allergic reaction to the Cipro. I contacted the pulmonary doctor and she said she would back the dosage to 500 mg but could not go lower as I would not be getting any benefit. I got the 500 mg and finished the 10 days that way. I did not have any further reaction. Within 5-6 days my cough was much better and I felt well enough to start exercising. After that things got better and better. Coughing subsided and a cough became a rare thing. I don't know what reaction you had with Cipro but just wanted you to know my experience. I, being the skeptic I am, felt the pseudo would come back. It has been six months and I continue to feel fine. I do regular nebulizing the Sodium Chloride twice a day but that is just me making sure things don't go in the wrong direction due to me being "lazy." I don't ever want that awful feeling to return. Best to you. Faye

A random comment for those of us who have been on a lot on antibiotics for bronchiectasis....my first and wisest PCP suggested I take an allergy tablet with each dose of antibiotic. If your body is on the verge of showing allergy, allegra might halt it. Sometimes that means taking two 24-hour tablets in one day. Even though the allegra bottle says 1x/day both PCP and allergist said 2x/day acceptable.

Thank you for this! I am going to try out levoflaxicin and see if I have the same reaction. I'll also take an anti-allergy pill beforehand.

Thanks @scoop this advice is very helpful. I may try taking 2 of these pills, because I'm feeling desperate lately.

Thanks @sueinmn for the response. I thought I had possibly gotten this when I was out digging moss and replanting it a month and a half back. So this has been building?

I'm doing airway clearance but nothing comes up. Just a small amount of mucous in my throat.

Well, Meghan, pseudo is faster than MAC to grow, but it still can take quite a while to cause issues. Maybe you had an earlier exposure, and the second just put your body over the top?
That's why I mask when digging and weed whipping if I can't get someone to do it for me. I know other gardeners with lung issues who do the same.
Good luck clearing it - mine hasn't come back for 5 years now.
Sue

Hi. It sounds like you are facing a lot. I can emphathize. I am finishing a 30 day course of nebulized gentamicin (same family as tobramycin) for the same bug (lavage culture verified). My oxyten sat rate is becoming more variable and dips down to 85 at times. My pulm has ordered supplemental oxygen to be available to me 24 hrs; awaiting approval from the insurance company. I’ve been diagnosed with bronchiectasis for about 18 years now. My heart is now slightly enlarged, slight thickening. Don’t know, though, if that is normal for my age (mid 60’s). The future appears uncertain. What do you do to help raise your spirits? Maybe someone else would like to share with us how they maintain their spirits?
Blessings to all

Not being able to catch your breath sucks. In 2021 I had plastic bronchitis and coughed out a big cast of my bronchial tubes when I arrived to the ER bio two was 38 so I do know a little bit about trying to catch your breath to lift myself up a little bit I like to go outside and play with my dog. Her being happy seems to make me be a happy. Take your time you’re day to laugh and smile.
Good luck.