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My MAC and bronchiectasis treatment

MAC & Bronchiectasis | Last Active: Feb 19, 2020 | Replies (48)

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@marthachs

@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

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Replies to "@pal131 , I’m so sorry you are needing to join the MAC club, but also, so..."

@marthachs I'm so glad to hear you are tolerating the Big 3 well - I too knew I was better with them than without, but after a long time they began to really drag me down. Over one month off and my digestive issues are finally improving, my energy is getting better, but still little to no appetite.
Wondering if you can tell us how long you have been taking the antibiotics, and when/if your sputum samples stopped showing MAC? Also, do you do any other treatments, either to counteract the antibiotics, like probiotics, or for your lungs, like saline, inhaler, airway clearance? Sue

@marthachs You may want to consider talking to your dr about going on maintenance meds. The infection may be mostly gone, but the reason you were able to catch is not. That is why there is a high incidence of the mac returning. I feel like now that most of us are on the 7% saline; that has helped curb this quite a bit. I have tested negative for mac since 2014, but I have been on monthly maintenance antibiotics up to the present. At first I was taking ciprofloxacin and doxycycline every other month for 10 days. Taking meds 10 days a month are very do-able, and it did knock out my mac. I later switched to just doing the cipro bi-monthly and tobramycin bi-monthly to keep pseudomonas away. All treatments must be tailor made for each patient. My treatment plan will not work for everyone.

@marthachs Hi there. I always worry too about people stopping their meds completely when they have finished their time. My dr was a firm beliver in 'maintenance' meds; which is what I am on now. (You can click on my photo icon and read about that) His philosophy was that mac usually returns because the reason you got it in the first place hasn't gone away, i.e. bronchoectasis.