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MAC antibiotics and side effects

MAC & Bronchiectasis | Last Active: Dec 29, 2023 | Replies (158)

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I just started the Mac treatment. Do not know what to expect.

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Replies to "I just started the Mac treatment. Do not know what to expect."

@derbeltal Hi, it's very hard to say - every individual responds differently. Some cannot tolerate the meds, some have few side effects, others figure out how to manage. Here is a little about my journey:
I was diagnosed with bronchiectasis and pseudomonas after being quite ill for over a year with a horrendous cough, weight loss, fatigue, intractable asthma and intermittent fever. While being treated for pseudomonas, the MAC cultures came back positive. Clearing the pseudo took 4 courses of antibiotics including tobramycin. Then in July 2018 I started the Big 3, 3 times a week. My cough cleared, and the asthma symptoms eased, but I battled fatigue, gastro symptoms and weight loss. Fast forward to today...I am on the Big 3 daily because the infection still shows in my cultures and CT scans showed increased size of spots in my lungs. I have stabilized my weight (much lower than I would like) by forcing frequent, small, high-calorie meals (no appetite.) The fatigue is always with me - some days worse than others but manageable. By taking my meds at bedtime and drinking ginger tea/real ginger beer often I am able to manage the nausea & other gastro issues. I am awaiting the latest sputum test results and the next CT to see if we can drop back to 3X/week. I manage the breathing/lung clearance with alternate nebs of 7% saline and levalbuterol - one of each per day when sputum is abundant, on alternate days when not, as well as my Aerobika breathing device. I am paranoid about the hearing and vision threat by the meds, so see the opthalmologist and audiologist every 3 months - so far, so good. Also my ID doc does my bloodwork every 3 months to check blood counts and liver/kidney function. I am tolerating this regimen because I know how ill I was before starting the meds, and know I could not live that way for long - and I have a lot left to live for.
Good luck to you!