New to the site… bronchiectasis, Pseudomonas and Tobramycin

Posted by mffox @mffox, Jun 23 8:18am

I just found this group…. Here’s my story:
Diagnosed with MAC in 1997 (detected early). 2 rounds of treatment over a total of 3 1/2 years eliminated it. No recurrence since, but other infections have been present, with progressive damage to lungs evident on CT scans. Lots of antibiotics over the years, minimal use of steroids.
Use Afflo vest and neb Perforomist twice a day, 7% saline daily. Also Spiriva inhaler and Albuterol as needed.
I’m 80, weigh 97 lbs, swim laps daily up to 40 minutes, walk at least an hour daily, do yoga, occasionally bike and basically arrange my life around my lungs.
Cough frequent, very productive (@ 1/2 cup of ugly dark sputum daily, occasionally with frank blood). Colonized with Pseudomonas, which became resistant to Levaquin 7 years ago. IV Ceftazadine reduced severity, but didn’t eliminate infection.
Started a trial of nebulized Tobramycin May 1st - 28 days on,28 off. I last coughed up discolored sputum a few days into treatment!
The effect has been stunning…. No coughing, great energy, I find it hard to believe. I haven’t been able to lie on my back in 20plus years, now I can swim the backstroke!
Has anyone else had a similar experience? How long can one stay on Tobramycin? Aside from the yucky taste, I have no side effects.

Interested in more discussions like this? Go to the Lung Health Support Group.

Sue, Volunteer Mentor | @sueinmn | 2 hours ago

@mffox Welcome to Mayo Connect, where I see you have already found your way to the MAC & Bronchiectasis support group.
Although I am not pone who has been on Tobramycin repeatedly, I know that some of out members have done so, maybe @irenea8 or others can answer for you.
Or you can navigate to the group:
https://connect.mayoclinic.org/group/mac-bronchiectasis/
Then use the "search discussions" box to find discussions about Tobramycin.

irenea8 | @irenea8 | 1 hour ago

Wow to 1997. You did not mention Bronchiectasis but assume you have it! Wow to your age and weight and yet your exercise routine. I can only manage 20 minutes on a flat treadmill and I am 75 and weigh 99. Did you just do the IV Ceftazadine one time and have improvement that lasted? Often we hear that Pseudo only really improves after using inhaled Toby. But many people do not tolerate it so you are very fortunate indeed and your improvement is wonderful. I also have colonized Pseudomonas but mine is chronic infection. I also cough up what you describe at around 4 plus ounces a day. I tried the Toby inhaled but only managed to use 5 times (literally meaning 2.5 days). For me it decreased urine output so I stopped. It can in rare cases damage your kidneys. I also lost my voice totally but could have lived with that. If you keep using it eventually you could develop resistance. Some Drs. will rotate it with Cayston to prevent the resistance. But Cayston is usually approved only for CF patients. If your Dr goes to bat it might get approved. Otherwise it is prohibitively expensive. There is also Colistin inhalation as an alternative. But not sure what coverage that requires. The nice thing about Toby is that part B medicare covers it! Anyway I hear of some people using it for years and not developing resistance yet.