Length of Time on Antibiotic Regimen

I was diagnosed with MAC and bronchiectasis in 2009. Took Azithromycin, Rifampin, and Ethambutol MWF for three years, then 250 mg Azithromycin for 9 years. Never got rid of MAC.

In 2021, I went to Mayo Clinic for consultation. After bronchoscopy, my pulmonologist there prescribed Azithromycin (500 mg), Rifampin (600 mg) and Ethambutol (800 mg) daily. In 2023, the Ethambutol dose was increased to 1000 mg because blood tests showed 800 mg was not therapeutic. This month, I started nebulizing Arikayce. I will be on Arikayce for one year beyond my third negative sputum test.

You've had a very long journey with MAC, maybe the longest I've read about so far. And that's a lot of years to be on the three antibiotics. How did you react to them? I've "only" been taking them for six months so far, and I want to nap half the week. How are you handling the Arikayce?
I appreciate your sharing this information.

To all of us who have been on azithromycin long term. Have you experienced or developed heart issues or symptoms such as tight chest and short breath? After all the testing ( no blood clots, stress test and echo normal)I still cannot enjoy some days even a simple walk. I am looking for reasons why I feel this way.

Thank you, lorrie48. I have a few side effects to the three antibiotics. In the beginning, I had severe diarrhea which eventually resolved. My experience was it took some time for my body to adapt to the medications. I don't remember bad fatigue but I was still working and had to make it through the day.

This second time on them I have no diarrhea. I am experiencing ringing in my ears and brain fog. I am experiencing fatigue but don't necessarily attribute it to the antibiotics. I think having MAC causes some fatigue (as well as mood issues) and I struggle to increase my activity level which helps. When I am more active, I always feel better.

As directed by my pulmonologist, I have regular blood tests to make sure my kidneys and liver are handling the meds ok. I also have regular cardiology visits (to check affects of Azithromycin), regular eye exams with an opthamologist, and recently added regular hearing tests. So far, all are good.

I just started Arikayce and so far I am doing ok. The doctor started me off slow so I am not full speed on it yet. I can tell already that my throat is irritated and I am a little more congested. The most frequent side effects are cough, sore throat and hoarseness of voice. I am encouraged because this medication along with the big 3 antibiotics promises a cure to MAC. Patients taking Arikayce receive a lot of support from the pharmacy that supplies it and a program called Arikares.

Hi lilianna. I have not developed any heart problems. I also have shortness of breath which I attribute to the condition of my lungs. I understand your fatigue.
For me, I think of fatigue as due to multiple factors, such as having MAC and bronchiectasis, being too inactive, depression, etc. I find increasing my activity level and having social engagements help me feel better. Do you feel better after taking a walk?

PS. I just realized another change I have experienced recently is food tastes different and not as good as usual.

Ditto the shortness of breath, but, more importantly, ditto the positive effects of increasing my activity level. It seems counterintuitive, but if I make myself walk or work in the yard when I'd much rather nap, the fatigue abates ... at least for the time that I'm moving.

Yes! I've noticed the same thing! Dang.

I found this site and very interested in what the comments are in regards to this disease. I was diagnosed with bronchictasis/Mac (Non tuberculosis) back in November 2023 and have been on antibiotics (Rifampin, Azithromycin, Ethambutal) and zenhal inhaer every day for the last two months and do not see any improvement yet, even though lung dr. said could start to see results in two months. - am actually coughing more every day non stop with lots of phlegm with the occasional blood streaks. Was trying to avoid the bronchoscope but dr. wants to go down with camera to see where bleeding is coming from. Very alarming and some days just want to give up 🙁 I lost approx. 15 lbs in which had none to lose.

what does the CT scan show as far as lung condition? Is the doctor an expert in treating bronchiectasis and MAC?