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Sue, Volunteer Mentor (@sueinmn)

Early Christmas gift - stopping the "Big 3"

MAC & Bronchiectasis | Last Active: Jan 29, 2020 | Replies (27)

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@rits I also want to point out that I nebulize tobramycin for 28 days every other month. It always starts out as an unpleasant experience. For the first two weeks, it causes me to cough my head off and lots of stuff comes up. It makes my lungs feel wet and uncomfortable, it changed my clear sputem green (probably from bringing things up from deeper down) Yesterday was the first day that the sputem came up clear. I will feel great by the end of this treatment. My point is; treatments may not be fun but are neccessary. Of course, you know your body better than anybody, and it may be better for you to quit your meds. I quit ALL of mine for two months last year. I told my dr about it and he laughed and said "Everybody takes a vacation from their meds at some point, and that is ok, just not as long as two months." He said " You do not want to take one step forward, and two steps back." Two months off put me at risk of undoing all of my previous treatment. Let me know if you do feel better off of your meds. Lots of people with chronic illness get weary of taking all of their meds. It is understandable.

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Replies to "@rits I also want to point out that I nebulize tobramycin for 28 days every other..."

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.

@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!