Starting BIG 3 tonight ….

Hi! I started all Big 3 at once on March 5, and was put on inhaled Amikacin twice daily on July 4th. I have MAI which is far more stubborn than MAC, so we're hopeful that I convert by end of the year. Personally, I love my inhaling sessions-a time to pause, sit still, and breathe deeply like my yoga workouts. Terri

Ah, I have MAI as well. No Big 3 yet (fingers crossed). I don't know my colony count since the lab at the center I go to does not have that ability. It is assumed it is a lower amount since I don't have a positive smear. From your post you sound as if you are a busy body like me however, I don't enjoy the nebbing sessions because it takes so long! 🙂 How long do airway clearance sessions take for you?

In the AM, my sunrise yoga
inhaled Amikacin, and 8 miles run work up any mucus. "Killing 3 birds with 1 stone" is such a timesaver! In the PM, I am blessed with a husband who cup claps my upper back to loosen mucus. I'm an expert now at huff-cough, so I seldom feel like I'm overloaded with mucus. I'm also very careful about not running outside in poor air quality from wildfires.
There are several labs in the USA that can give your doctor more information about counts, etc. if you or they are interested in getting down to the nitty-gritty of knocking MAI down. I can't believe how much better I'm feeling after just 6 months of treatment. Though I thought I had "virtually no
symptoms", now that I'm on the Big 4, I'm feeling like a 20 yo runner again, and going to get back to half marathon racing! In my particular, these 4 meds and my lifestyle choices have made me a new 64 yo!

Nebbing itself is about 6 minutes each session. I use the Pari Lamina for my Amikacin.
Terri

@terrimn why did you chose to inhale Amikacin rather than use Arikayce?

@terrimn
Do I understand correctly that you do not nebulize hypertonic saline to help with clearance? Only Amikacin?

See an ophthalmologist at least every three months for vision checks. Some people are checked every month or two months. Make sure your ophthalmologist understands ethambutol risks. Ethambutol, which is used only for TB and MAC, is unfamiliar to many healthcare providers. Do careful self checks including reading very fine print. Any fading of letters or colors could indicate ethambutol induced peripheral neuropathy, which can cause devastating and permanent vision loss. Ethambutol can also cause peripheral neuropathy, numbness in hands or feet. Any numbness, ask to be taken off ethambutol until it is clearly not causing the numbness. I am legally blind and have numb feet and legs thanks to ethambutol. My care team misdiagnosed the numbness and did not discontinue the ethambutol. My ophthalmologist would only see me every six months. In hindsight I probably started having vision problems before months on ethambutol. It was very subtle and I didn’t pick up on it . A tennis pro told me he thought I was having vision problems at about the 4 month mark. After an ophthalmologist misdiagnosed vision issues as not antibiotic, I decided numbness/vision problems could be ethambutol and asked to discontinue. It was too late. Vision and numbness continued to get worse for several months. I recognize my case is unusual, but, to the best of my knowledge, no test is available to determine who is susceptible to vision loss. Numbness started at 3 mos, 11 days. My care team diagnosed as covid related. They were very wrong.

@cwal and @bayarea58
Oops-Need to clarify: I nebulize hypertonic 0.9 in the AM and Arikayce for the PM. Zero side effects and yesterday finally tested MAI negative after 8 weeks on Arikayce. So just 24 more months of all 4 antibiotics as long as I continue to test negative.
Fingers crossed!

@terrimn congratulations on the conversion! I am curious about the 24 months of treatment, as my doctors have always said 12 months (from sputum conversion). Do you know why your doctor counsels 24 months?

Good for you! Sounds promising. Did you have a high colony count or did you not have that information available to you?