MAC antibiotics and side effects

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!

Thank you so much as I have no idea what expect.

Hi, I am Jane or JJ and am new to this site. I was diagnosed with MAC 2/22 and started the 3 antibiotic regiment in 8/22. Has anyone been told to use a nebulizer and flutterer? I am using it twice a day with no improvement in ability to bring up congestion. Am ready to stop as very frustrated. Have always had trouble giving sputim tests to the point one time they did a broncoscopy. Sometimes I have tested for as many as 3 different variances.

I use a nebulizer with albuterol followed with 3% saline twice a day, morning and evening. In the afternoon I nebulizer with just the saline. I use the aerobics after all 3 times.

Do you find that it helps you? I just seem to cough more and can't bring anything up.

It does help me. I also stay hydrated with boiled and cooled watetr.

Hi, JJ,
Flo/Frankie16o here to share that I too was diagnosed with MAC Lung in June 22. I was put on 2 of the big 3 right away which stopped the horrific cough and then started the 3rd antibiotic in August. I take the Big 3 at bedtime and have had few side effects. The cough returned a month ago and has been productive. I was encouraged to Nebulize with just Abut oral 2 times a day! After 3 weeks the cough got worse and I stopped the Nebulizer in favor of the aerobica one time a day and the cough has now continued to be horrific. I see stars when I have a coughing fit. I drink warm tea to sooth the throat and will call my pulmonary Doc and Nurse Practioner on Tuesday if the cough continues. I too am frustrated.
Flo

I had my phlegm tested after being treated for a year for MAI with the three antibiotics. The test detected Candida krusei. Anyone else experience this?

If anybody took clofazimine , please respond to this email and tell me if you had side effects and how you dealt with them. I have been on it, among a round of amykacin infusion and azithromycin (still on it since April) and I noticed my hair falls out, and quite a lot. I also read that the discoloration of skin is common- it scares me.
Thank you