Have Bronchiectasis, recently diagnosed with pseudomonas

@heathert Thanks for the info. I'll remember to ask my pulmonologist next time I see him.

@auntnanny No. I was not tested first to see if I could tolerate tobramycin. It was just prescribed for me. It made me cough at first when I inhaled it, and it gave me a slightly sore throat and hoarse for about 4 days. After that, I did fine with it. I did it for 28 days and it took away my cough that I had for nearly ten years! I think it knocked the pseudomonas down far enough where it didn't give me symptoms. I spoke to my dr at Mayo this week and told him that I had trouble taking toby for some reason (been on it since 2016) He said it was a coincidence and to try it again, that toby is very well tolerated by most people. I know Katherine said that she got very sick from the toby, but I believe she was already super ill from the numerous bugs she had. You can ask your pharmacist about toby side effects. I would hate for you to have the expense of that trip just to test a med (unless you are driving distance to Mayo). May want to ask your dr why or IF that trip is really necessary. Please keep us posted.

windwalker ---- Dr told me that some people have bronchial spasms and he wanted me there in case breathing was an issue. He said there would be nurses with me the whole time of the trial (so I assume he's had some experience that wasn't good). Are you saying that at this time you are having a little difficulty with it -- after using it for two years? He also said if I can tolerate it they would re-evaluate me after a year to see if I needed anything more. It's a 10-hour drive (stopping only for gas and bathroom -- eating a sandwich on the go). Not great fun but will do it. Thanks for responding.

@auntnanny He must feel it is necessary; better to err on the side of caution.

Hello auntnanny - I was going back through past messages and found yours from 2018 about pseudemonas. Did the 30 days on, 30 days off of the Toby get rid of your pseudemonas? Did you do that for a full year? The many times of my using Levofloaxin for my pseudemonas over the last 6 years has now resulted in neurapathy in my feet and toes. I now have pseudemonas again but I am afraid to take the Levo for fear of the neuropathy getting worse. My doctor says nothing else treats it. Can you tell me about your experience with the Toby and your pseudemonas? Pamela

Hi, Pam..... I was told by Mayo's the tobramycin was the only way to rid the pseudemonas and they asked me to come to Rochester for a trial with it before starting the program. I did that and I did a vial through a nebulizer while someone there was with me -- no problems. So, I was given the prescription for it and was told it would take possibly a year for it to rid the bacteria. I got along with it okay for maybe 2 months and then started having difficulty breathing when I used it and it was very scary to me and I was taken off it. I've never tried it again but perhaps I will one day. I've been off it about 2 years now. I do know two ladies,though who are using it and never have any trouble with it and the results are good. So...... let me know if you give it a try. It's very expensive but my doctor at Mayo's wrote a prescription for me and Medicare picked it up.

thank you so much for this information - did you get retested after those two months on it, and had the pseudemonas cleared up? Has it come back since? Pamela

One last question: when you suddenly had trouble breathing when using it, what did you do?! That sounds awful in all ways. Did that last for many minutes and were you able to breathe again by using a rescue inhaler? Pamela

I didn't have a rescue inhaler because I had never needed one. I sat down and stayed very quiet. My son was here and he helped me by saying "Don't talk, Mom"....... it passed after maybe an hour. It just kept easing up as I sat there.

@pamelasc1 Your doctor needs to run a sensitivity test on your most recent culture to see what medicine will work best in eradicating or controlling the bacteria. There are several medicines that can be prescribed for pseudomonas but without the sensitivities test, you won't know which ones are most effective to treat it. My pseudomonas is entrenched in my lungs. I have used inhaled Cayston, Colisitin, Amakacin, Tobramycin and oral antibiotics as well to control it. @lindam272