Starting MAC treatment with "big three" drugs: What to expect?

Hi Sue, I started the Big 3 about 10 days ago and began having tinnitis after only a week of being on the meds... my ID said to stop taking all of the meds until I see my ENT next week. Just wondering what your experience has been with the tinnitis, did it start early after starting the meds and did it get worse with time or did the tinnitis stay about the same? I have a consult with Mayo next month so I'll see what they say as well...other than the ears I have had no issues with the meds

I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue

I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue

Miriam, this sounds like a scary time. I hope you have a plan for treatment and start to feel confident about the path forward very soon. My best to you.

@sueinmn The tinnitus was worse for me on azithromycin. With a switch to clarithromycin it has been much less in severity and frequency. @irene5

Hello
I wanted to follow up with you all. I started the 3 meds two weeks ago and so far so good. I was so scared. I had some nauseousness with Azithromycin the first day but it has gone away. The only thing i notice is metallic taste in my mouth with this med. Doctor says its rare but its ok. I eat ginger candy and it helps. The other two are fine for now. Praying that it continues as i go through the treatment. Prayers are working!!!
I hope i see improvements of my symptoms as i progress with the treatments. Fatigue is a big one.
Thank you all for your thoughts and experiences. It really helps to hear how you all handle this.
Thanks miriam

Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.

Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.

I usually try not to repeat myself, but much of this post is a copy.
First of all, there are lots of things you can do except wait. And some of them may slow the progress of the infection in your lungs enough so you "watch and wait" indefinitely without antibiotics. That is not a promise, only a possibility - each of us is different.
I was on the Big 3 for a year and a half, treating and tolerating the side effects as long as I could, before I told my ID and pulmonologist I couldn't do it any longer, even though I was still positive for MAC. They did a CT, which showed improvement,
but not complete clearance, and reached out to National Jewish Health to consult.

In December 2019, I went off the meds, and onto the following routine:
Airway clearance - nebulized 7% saline solution (7% has been shown to also fight the growth of MAC, but lower concentrations can also help thin the mucus & "tickle" your lungs to move mucus) followed by coughing, using my Aerobika if needed. At first twice a day, now once a day unless congested or having asthma problems (then I add levalbuterol neb too)
Anti-mucolytics - the best known is guaifenesin - Mucinex 600 LA (without a decongestant) is what I have been using for 35 years. Recent research in Cystic Fibrosis had also shown that N acetyl cysteine (NAC) is useful to thin mucus, so I also use 600mg twice a day.
Liquid - lots of it, especially water. I also drink and herbal tea called Breathe Easy by Traditional Medicinals, especially in cooll weather.
Healthy diet, moderate exercise and rest.

I have had only one exacerbation that was treated with increased nebs & steroids. My CT scan at 18 month showed no changes. Two weeks ago we caught a bronchial virus and I didn't even get bronchitis - a first for me in over 20 years, so I guess my routine is working.

Do you have an airway clearance routine? With bronchiectasis, asthma or COPD, our lungs don't clear mucus properly, providing a breeding ground for bacteria. So even when we don't feel congested, we need to clear it out ourselves. As I write this, I am sitting here "puffin' the pipe" and coughing!

Sue