Most people quit their job under Big3?

So glad you "never had many side effects". I am suppose to start Azithromycin and Ethambutol 3x a week for Macrobacterium Avium Intracellure. No cavities or nodules, at least not told I have any.
Six years......is that daily or three times a week?
Is the six years because of MAC alone or pseudomonas with MAC??
I take it you are still on the meds and have not cleared up the MAC or pseudomonas, if you also have pseudomonas??
I ask because you mentioned "how much worse off I'd be had I not been keeping things at bay with the meds."
I have often wondered how others manage if still working, I am retired and MAC diagnosis 10/2022.
Barbara

I've been on the Big 3 every day for 6 years and the Clofazimine every day for a little over a year. I initially started the inhaled Arikayce every day for the first couple years but was able to decrease it to 3 times a week. I also nebulize Levalbuterol then hypertonic saline solution twice a day. I also Mycobacterium Avium Intracellure also. I had a 10 cm cavity grow in my upper left lobe within a month or 2 before starting the antibiotics. Once I started all the meds and up to now, it has shrunk to 4 cm.

So being on big3 improved your mac symptoms? My symptoms are throat clearing all day and have this thick glu like mucus stuck between my nose and throat.

@donnajones did you do Big 3 daily or 3 times a week?

@suzyqueue what is your experience on the daily Big 3? How well do you tolerate? My doctor is recommending IV amikacin in addition to Big 3, which I have read is more difficult to tolerate than the inhaled Arikayce.

@mali I can’t be of too much help with recommendations for NTM specialists in California as I am still working on the issue myself. If you search past discussions you will find some recommendations others have made. I am in Bay Area and here UCSF has a BE/NTM specialty practice which looks like it could be a great resource but I don’t have any personal experience with that practice. I believe at least one other member has commented that they are a patient of the UCSF BE/NTM practice and had good things to say about it. That said, I have read Hawaii has one of the highest infection rates with MAC/MAI so I would be surprised if there is not someone local-ish to you that specializes in NTM. Good luck!

I tolerate the Big 3 very well. If I have any "digestive" issues, I take Imodium and it helps. My Infectious Disease doctor says the IV Amikacin is more toxic to the body than the inhaled. Also the inhaled medicine goes right into the lung.

Have you seen ENT for the mucus in throat? On any nasal sprays or rinses? Getting my post nasal drip treated has stopped my horrid coughing fits. The little nagging cough responded to asthma meds.

Daily

I've seen an ENT and nothing was found. I tried neilmed sinus rinse with no luck