Have Bronchiectasis, recently diagnosed with pseudomonas
I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.
Liked by Katherine, Alumni Mentor, Ballred, Bonniewhite56, Margie E
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3636
Joined: Nov 18, 2016
windwalker……. I'm curious as to whether you were tested to see if you could tolerate tobramyacin before you started it. My Mayo doctor wants me to come to Rochester to be tested with it before I start a program of 30 days on — 30 days off. No other antibiotic on the "off" month. He thinks a year of that might rid the pseudemonas. My appointment is Feb 6th — hoping snow is not knee deep up there at that time.
@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.
auntnanny
@auntnanny
@auntnanny
Posts: 225
Joined: Oct 18, 2016
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.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3636
Joined: Nov 18, 2016
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.
@ling123
@heathert Thanks for the info. I'll remember to ask my pulmonologist next time I see him.
Liked by heathert