Tobramycin inhaled side effects.

I started inhaled Tobramycin about 8 days ago. My mouth has gotten so sensitive to anything “zesty” - even mustard. I do rinse and gargle water several times after I nebulize it, but I’m wondering if anyone else has a better solution to this? (I don't have any signs of thrush). I also have throat irritation from it.

My latest sputum sample was 1+ mucoid and 1+smooth pseudomonas. Do yall usually go ahead with treat at these levels? I’ve had it awhile and I’m assuming it’s colonized. I had a bad case in feb, and spent 2 weeks in the hospital on zosyn. It was a much higher + number

You ask good questions but I think the answers will be different from each of us who’ve been on inhaled Tobramycin since it impacts each of us differently. I can give you my experience and hope it helps you, but again, your experience will be different.
1- The increased mucus caused by Tobi may never slow back down. In my case, it slowly increased over the 16 months I took it. Coughing also increased to the point I experienced violent coughing with thick constant mucus production. My doctor ultimately said I was experiencing Bronchial Spasms, which can happen with years-long use of inhaled Tobi, but not typically with the short time I was taking it.
2- I didn’t experience the mouth sensitivity you describe but I did have a constant nasty taste in my mouth no matter how many time I brushed my teeth or used mouth wash. My doctor told me to take a spoonful of raw honey prior to each treatment and that helped tremendously. The bad taste eventually decreased to a tolerable level. Give it a try, it may help.
3- I too had tight chest feeling that progressively worsened, but my O2 sats dropped to around 89-92 and never went back up to my normal 97-99. My resting heart rate also went way up to 75-100 bpm when it’s normally in the 55-65 range. This was evidently part of the Bronchial Spasms.
4- I never got used to it and during my “off” months the infection returned so my doctor put me on inhaled Colistemethate alternating every 28days with Tobi. It had a worse taste than Tobi but the two meds together definitely helped improve (and maybe, hopefully clear?) the Pseudomonas infection. Unfortunately I eventually developed the same Bronchial spasm effects as I was having with Tobi and my doctor stopped both treatments 2 months ago. He had started me on 25 mg Brinsupri last fall as soon as it was approved and I am tolerating it very well. He is hopeful the Brinsupri will help keep the Pseudomonas in check, but who knows. I can say that as soon as I stopped the Tobi/Colistin combo, I felt normal again. O2, heart rate and energy level went back to normal, mucus and coughing decreased significantly, no chest tightness and no signs of infection ….. so far. Best of luck with your treatment. It does help the infection. Keep notes of all your symptoms and side effects and discuss them with your health care team. Wishing you the best.

Wow, I was on toby pods for 2 weeks but then my drug plan switched it to the liquid. I was one month on, one month off, then another month on for pseudomona colonization. That was last year, then the pseudomonas, it became resistant to the Toby. Over the past year, I realized that zesty foods, salad dressings, mustards, anything with vinegar would irritate my mouth. I never connected it to the toby. I still have to consume zesty foods in small quantities. I wonder if that sensitivity will ever completely go away. I love all kinds of vinegars. I use them all the time but have to limit them now.

Such helpful comments - thank you so much! I’ve stopped it for now because I got so exhausted from coughing. I also felt breathless constantly and wanted to just sit in one place and rest.ill be talking to my doctor about it. From your comment I’m also wondering if it permanently damages our mouths? I hope yours goes back to normal!

I also looked into the pods, and was told that the mouth issues aren’t as bad with the pods since it goes back to the throat instead of continuously bathing the whole mouth with the meds. However it apparently causes bad coughing until you get used to it. Before I try it though I need to find out if I’m having the bronchial spasms or just throat irritation. Anyone have more comments on the pods? Thanks!

Has anyone had any experience on nubilizing tobramycin and what kind of side affects you were having? I just finished 14 days cyprofloxen for pseudomonas and now on a 3 month consecutive inhaling tobramycin. I am now entering week 4 but am kept up all night from coughing and also constantly bringing up a lot of mucas with it.
I have also been experiencing major joint pain - back, groin, hip, foot, you name it and some days can hardly walk. I have been going to physio every week but nothing seems to be working. Any comments or ideas on this? Not sure if it is the meds or just life! I am 68 years old and was very active up until 2 months ago when my body was taken over with pain.

@clk1958 Let's ask someone who has a lot of experience with pseudomonas. @irenea8 can you talk about how inhaled tobramycin affects you?

@sueinmn
If you are newly diagnosed with Pseudomonas and have not had it for long then you stand a chance of eradicating it. It seems the standard protocol from most Pulmo's in that case is Cipro for 14 days followed by inhaled Toby for 2 to 3 months. The Toby does seem to work or be an important part of the treatment. So If you can tolerate the Toby it does often work in this scenario. But some people find it very harsh and hard to tolerate in terms of irritation to the airways and voice loss etc. A couple of RARE cases on this forum of kidney damage from inhaled Toby. In my case it caused decreased urine output so I stopped. It was also very harsh on my voice but there are ways around that. I stopped due to the urine output which is RARE. If you have colonized Pseudomonas then Toby is prescribed differently. You use it ongoing every other month or rotate it with Cayston (one month Toby and one month Cayston). Cayston is hard to get approved unless you have CF. Not impossible however to get approved if your Dr knows how. If you cannot tolerate Toby at all, Cayston is a good alternative. There is also Colistin which many seem to tolerate better than Toby in terms of airway irritation.

@clk1958 I had those side effects after being on cipro. Those are the listed side effects . I am 68 also. Active person. But then I tore a tendon in my foot. Im never taking cipro again