Have Bronchiectasis, recently diagnosed with pseudomonas

Hello to this wonderful group, I have been following for awhile and also am at at a loss for treatment for my Mom. Currently she sees a pulmonologist and ID at St.Luke’s Hospital in Milwaukee WI. She is on Ethambutol, Azithromycin, recently added Clofazimine and uses Amikacin in a nebulizer. She couldn’t tolerate the 7% saline, it hurt her throat. Also Rifampin interfered with Coumadin she takes. Horrible reaction. She takes that preventively because she used to go into Afib but hasn’t for many years.
She has no appetite, is weak and short of breath and coughs a lot.
She was diagnosed with Bronchiectasis 5 years ago , her recent CT scan shows no changes in the last year.
She has a strong good heart and was physically fit. An active vibrant woman even in her 80’s. Never smoked and was super health oriented. We just don’t know if there is better treatment. The docs she goes to have a few MAC patients but are not specialists. Should we try Mayo do you think? I live in the Chicago area and do not know anyone here. It’s been so hard and very sad. If anyone has any suggestions , thank you.

Just wanted tot say that the tobramycin isn't dependent on the coughing up mucous to do it's work. It is an antibiotic that needs to stay in the lung to work. Back when I was on it, I'd nebulize albuterol to open up my airways, then, nebulize 7% saline to clear the lungs out. After all coughing up phlegm was done, I'd then do the inhaled tobramycin. That is the correct order to do these nebulized meds.

Good info Terri. I've had Pseudomonas off and on for 3 years. I like your thinking about how to approach the treatment. I've never been told about doing treatment in steps as you prescribed. Makes sense. Will give that a try. It is frustrating that it never seems to "kick" Pseudo to the curb forever. I made it almost a year this last time before my symptoms occurred again. At the moment my last sputum 2 months ago showed abundant Pseudomonas A. but he does not treat unless I'm symptomatic. He has indicated that if I need inhaled antibiotics (Tobramycin) he does 2 weeks on and 2 weeks off. My previous pulmonary doc did 28 days--one and done. He did not say to do the 7% while on Toby. Also no vest usage when on Toby. Thankfully I'm feeling fine--just staying with airway clearance (7%) twice daily. Things could be a lot worse. Blessings to all.

I’m new here and am in need of advice. My doctor wants me to start inhaled Tobramycin. I have Pseudomonas but have only been hospitalized once in many years. I am managing my symptoms with Annoro inhaled powder in the morning plus saline and Ipatropium plus saline in the evening. I also have an Afflo vest which helps. The Tobra scares me because it has side effects and is also something that is going to be required indefinitely. And besides it is time consuming. Can anybody tell me if it really works. Does it make you feel any better at all? And what side effects has anybody here encountered.

Yogama,
The only suggestion I can offer is get a second opinion and follow your gut. You know your body better than anyone and know what your body can tolerate.

My husband and I both have Bronchiectasis (his is very mild) and we both had Pseudomonas at the same time 5 years ago. Because both of us have other health concerns and were symptomatic, the doc wanted to treat it. We started with oral antibiotics (sorry, which ones are lost in the sands of time.) It took my husband 2 10 day courses and his was gone.

After 6 weeks of 2 different antibiotics, my infection would not budge. A month of inhaled Tobramycin, as annoying as it was, knocked it out. I had many sputum cultures afterward while being treated for MAC, and it never reappeared. The side effects were primarily a sore throat, hoarseness & temporary loss of voice. I treated it with honey & cough lozenges, and it was gone about 2 weeks after I finished the Tobramycin.

With newer information about the damage long-term Pseudomonas can cause, it seems more doctors are treating it aggressively. See: https://bronchiectasisnewstoday.com/treatment-pseudomonas-aeruginosa-infection/
If it would make you more comfortable, maybe seek a second opinion from an infectious disease doc?
Sue

I was recently diagnosed with Pseudonymous after 8 months of worsening cough that affected sleeping and energy level. I was diagnosed with bronchiectasis and MAC 12 years ago. I initially was treated with triple antibiotics, which I tolerated well except for fatigue. I have difficulty producing sputum but it was assumed that it was still present. Fortunately, I have had minor symptoms over the years. Only some coughing spells. These would wax and wane. Some months no coughing.
I was able to walk 3-4 miles per day with no difficulty. Saw my pulmonologist regularly and CT scans showed no changes. When Pseudomonas was diagnosed from an induced sputum sample ( there was no evidence of MAC.) I was started on a 4 week course of Cipro and inhaled Tobramycin. After one week I started to feel better. Then I developed hoarseness, which can be a side effect of Tobi. Told to take a one week break from Tobi. Hoarseness resolved. Then restarted on Tobi but only one dose per day. No side effects. Now feel better than I have been for years. Sleeping well, walking 6 miles per day. I am 72.
My doctor is not planning to continue treatment unless there is a reoccurrence of symptoms. I wonder if I have had Pseudomonas for years but the symptoms just recently became worse.

Thank you for the comments. This gives me hope and I think I’ll have to give it a try since my lungs are getting worse. I have an appointment next Wednesday . Was thinking to ask about inhaled antibiotic 8n powder form. I have read about it and that could be an option. Anybody here tried that?

I was also recently diagnosed with psuedomonas and feel incredibly fatigued for several months. I'm allergic to cipro and have been nebulizing with Tobramycin for almost a week. I still feel awful. Does anyone know how long it takes to start feeling better with nebulized Tobramycin? Or else alternatives to Cipro? I'm so ready to feel normal again and not feel like I need to sleep all day.

Hi Meghan, When I had pseudomonas, it took over a month for me to begin to feel any effect of the meds, and over 2 months to clear. Remember, this had been building in your body for a long time, and has hidden itself way deep in your lungs.
Are you doing any airway clearance to help get things moving, and cough out the mucus where the pseudo breeds?
Sue