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Diagnosed with MAC but not being treated
MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (100)Comment receiving replies
wildwalker…… I believe you are on Mayo's program of tobramycin and last week I visited Mayo's in Rochester because they wanted to test me to see I could tolerate it. I did fine with the test and my program is 30 days on (twice daily) and then 30 off. Doctor says if I have flares during the off time he will most likely do two weeks on ///// two off. My sputum testing has been coming back pseudomonas. Also, while there, they did sinus surgery and are hoping they got rid of some of the infection being harbored there. My question is: Do you remember how long it was before you notice good results from toby? I've been on it six days and I don't think the coughing has gotten any better yet. As an added note...…. I remember some talking about the expense of this antibiotic and I purchased mine at the Mayo pharmacy and my Medicare paid all of it. Just thought someone might want to know.
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@auntnanny...r u on 300ml of Toby....it took a few weeks when I was on it, to notice improvement
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@auntnanny Hi Jan! I am so glad that you could tolerate the toby. Any time I go on it, things get worse, then turn around to great by the end of the 28 day run on it. The very first time I went on it I had had a severe cough for years. I was over the cough by the end of my 28 day run; that was in 2016. I have been cough free ever since. My first experience with toby started out with sore throat, raspy voice, increased coughing, wetter lungs. I thought it was making me worse. My dr assured me that it would improve. After two 1/2 weeks, the raspy voice went away as did the sore throat. I still coughed and had increased sputem. But then, by the end of the 28 days, it was like a miracle happened. The persistant cough of years was gone, and my lungs cleared up. I felt better than I had in years. I hope that it works as well for you as it did for me. It may feel rough at first, but hang in there and let it do it's job. On the 'off' month, I take a ten day run of cipro. That is to stave off any other opportunistic bugs and keep me infection free. So far, so good, infection-wise anyway. I still have damaged lungs, COPD, and bad shortness of breath. I just keep rockin & rollin'. Will you please check back with me and let me know how that toby does for you after the 28 day run? Hugs!