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Early Christmas gift - stopping the "Big 3"MAC & Bronchiectasis | Last Active: Jan 29, 2020 | Replies (27)
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Replies to "@rits I also want to point out that I nebulize tobramycin for 28 days every other..."
@windwalker That last sentence Terri is incredibly and unfortunately accurate! I think that’s why this forum is so good because we lift each other up when necessary and provide immeasurable support and invaluable information to one another always!
Thanks for your response. I am positive that my doctor, who put me on these drugs, would be ok with me stopping now. She had me stop Arikayce for a month last July when I had a bad reaction after only 5 treatments and had me start again but only 3x per week. During our last conversation, she told me to stay on it as long as I can. I've stopped and will see what happens with respect to mucus and shortness of breath. She also told me that we might stop the oral antibiotics before June.
As for those antibiotics, they worked wonderfully well for me giving me negative samples in only 2 months. Now, I need to find out if they are what is causing the extreme digestive issues I have been suffering. I saw my oncologist this week and she could find nothing in her exam or review of my recent ct scan that would account for the extreme problems I am having which have had an enormous effect on my qol.
I like the vacation terminology. Obviously, if nothing improves while I am off the drugs, I'll start them again. I will discuss all this at length with my pulmonologist at my appointment next month. I'm glad your program is working for you.
I should add that I was not symptomatic for the disease but it showed up and was spreading on ct scans so sputum sampling was done. I was doing much better with MAC than with antibiotics.