Tobramycin questions

Posted by sarahlynn1960 @sarahlynn1960, 3 days ago

I was on Tobramycin for abt a week before I stopped due extremely sore mouth and constant coughing with tons of mucus. It been 3 weeks now since I stopped, and I have a fever and still have congestion. I sent in a sputum sample, but meanwhile I’ve been worried that that extra mucus caused my pseudomonas to multiply. Or I may have cultivated a new infection.
It looks like all of the inhaled meds for pseudo all have that potential side effect. It just seems so counter-productive. Those of you that it helped, did yall have brace it thru all of this mess for weeks??

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desertdwellerjh | @desertdwellerjh | 2 days ago

Re Tobramycin (nickname TOBI) and coughing. Yes, I sympathize re the coughing. I was pretty overwhelmed by it too and I was prescribed for 28 days of a dose every 12 hours. Before each dose I nebulized 7% saline. Then TOBI. My doc coached me through it encouraging me to cough it all up and out so I stuck with it in spite of the coughing and the mucous production. Everyone is different of course so this was my experience and yours may vary. Best course is to ask your pulmonologist for guidance. The saline nebbing first seemed to help get ready for the TOBI and of course TOBI as well as saline for that matter both weaken the outer membrane of the pseudomonas aeruginosa making it more vulnerable to the dose of TOBI.

sarahlynn1960 | @sarahlynn1960 | 2 days ago

That’s very interesting. Thank you for sharing! How did your pulmonologist coach u through it? Also did you stay coughing and full of mucus the whole time, or did it get better by the end? Did it get rid of your pseudomonas, or tamp it down? Sorry for so many questions

desertdwellerjh | @desertdwellerjh | 1 day ago

In reply to @sarahlynn1960 "That’s very interesting. Thank you for sharing! How did your pulmonologist coach u through it? Also..." + (show)

@sarahlynn1960
Text support thru portal helped a lot. As treatment went on, the coughing did ease and along with it clearer mucous until it was totally clear. Such a huge mood booster. Two sputum samples/lab analysis the second a month later showed no evidence of pseudomonas (the first had too much saliva so the second time before I ate or drank anything I had a small swallow of water to clear my throat and then did the saline neb). I am praying it is gone.

sarahlynn1960 | @sarahlynn1960 | 1 day ago

Wow I'm SO HAPPY for you! Your details are so helpful too, and I’m glad encouraged to give it another try, but with the podhaler so my mouth doesn’t get so sore and sensitive. Apparently the podhaler sends a powdered version of the med straight back to the throat instead of bathing the whole mouth with the meds for 30 mins 2x a day. Prob more coughing at first though.
Were they planning for u to do the treatments 1 month on and 1 month off etc until u had that negative culture?

desertdwellerjh | @desertdwellerjh | 18 hours ago

In reply to @sarahlynn1960 "Wow I'm SO HAPPY for you! Your details are so helpful too, and I’m glad encouraged..." + (show)

@sarahlynn1960 I would assume so re one month on one month off since that seems to be the protocol. Right now I am scheduled for a check up in a few months. A recent CT for another unrelated issue revealed my MAC is still present (no surprise) but no other apparent issues w the lungs.
Daily nebbing w 7% saline remains a necessity for me and produces clear mucous. I believe it is important in my quest to stay as healthy as possible.