Have Bronchiectasis, recently diagnosed with pseudomonas

Hi Rits..Cipro and Levaquin are usually tried before nebulized drugs..Nebulized Colistin has been a life savour..I’m not sure I would wait till the end of the year to try Levaquin..Pseudo is a nasty bacteria..Low density CT scans at least yearly, and regular sputum samples should be done at least twice a year..airway clearance, Aerobika, snd 7 percent nebulized saline x2 a day is huge for me..💕

Hi Pam..when I nebulize Colistin for pseudo, I use a bronchodilator to open up my lungs, then nebulized 7 percent saline, then nebulized Colistin, or Toby in your case..airway clearance is huge with pseudo to get the mucous out of our lungs..done twice a day💕

this is very helpful. Did you do the saline, then folllow up with the antibiotic within minutes of finishing the saline, or do you wait some before going on to the antibiotic? Also, is it ok to use the same nebulizer cup for each one ( of course rinsed out first) or do you have two different cups? Pam

Thanks Jennifer. I'm glad your treatment is working for you. ❤ I picked up pseudomonas in the hospital in January 2019 so I have had it for some time. It stopped appearing when I took the antibiotics (successfully) for MAC. Then it reappeared again.

My records show that I am allergic to cipro. My former pulmonogist prescribed it several years ago and I had severe diarrhea from it. I don't remember why she pescribed it because I didn't test positive for any bacteria until years later. I also don't know why she put it in my records as an allergy because I believe that diarrhea is a side effect common in antibiotic treatment and not an allergy.

Also I had extreme radiation for cancer 25 years ago which affected my digestive system and when I had colon cancer (caused by the radiation) surgery in 2015 the surgeon removed almost two feet of my small bowel because it was in bad shape due to the radiation. That REALLY messed me up and when I took the MAC antibiotics I had a lot more problems than usual.

So when my doctor decided to treat the pseudomonas the choice was an inhaled drug or oral antibiotics and she chose the gentomicin which apparently is better tolerated and just as effective as Toby. I cannot tolerate hypertonic saline and neb normal saline
.9% instead and had problems with the gentomicin.

My colon problems got worse after I stopped the MAC antibiotics so it wasn't related to the oral treatment and I want to try an oral one again.

We are all different and bring our various medical issues with us which affect the treatment options. I'm sure that my doctor will prescribe an oral antibiotic when I see her again- via video.
Rita

I will answer with what I did - others may find a different routine that works better.
I used my bronchodilator first - either an inhaler or a neb, depending on how my underlying asthma was behaving. Then I used saline - followed by 5-10 minutes of airway clearance, depending on how much mucus was coming up. Finally, I would use my Tobramycin.
All using the same cup, rinsing between, although as someone else pointed out recently - it's all going the same place, so maybe the rinse isn't necessary.
Sue

Hello Sue - did you find that inhaling the Toby made you lose your voice? I have lost mine after 5 days of treatment. The doctor suggested I wait a few days and then begin again. Have others of you taking Toby had similar experiences, and is there anything one can do to help with one's voice loss? Should I just expect this to be the case while taking it for the 30 days? I can live with it, but would rather not! Thanks, Pam

ok - this is helpful. So you voice was lost for the entire time you were on it, right? Pam

Hello Sue - did you find that inhaling the Toby made you lose your voice? I have lost mine after 5 days of treatment. The doctor suggested I wait a few days and then begin again. Have others of you taking Toby had similar experiences, and is there anything one can do to help with one's voice loss? Should I just expect this to be the case while taking it for the 30 days? I can live with it, but would rather not! Thanks, Pam

Hi Pam. I've had to do Toby three times over a two year period. I lost my voice about a week into the treatment each time. My pulmonary doc said to use warm salt water gargle. It worked pretty well except the last time. Voice took weeks to return following treatment.
It is odd situation but not the worse thing--like not being able to treat Pseudomonas. I'm not sure mine is cured but suppressing it is not all bad. Sometimes just getting a "break" from the symptoms associated with this nasty bacteria is a good thing. God Bless. Faye