@auntnanny I have been on the Big 3 off and on since 2016. Because my MAC is not responding, has gotten significantly worse, and I have difficulty with the three meds, I have been put in a clinical trial with Arikayce plus the other meds. You only have to be able to tolerate two. Arikayce is an inhaled MAC med with the thought being there will be fewer side effects with a med going straight to one’s lungs. irene5

krene5 ..…. thank you so much for taking time to share what you're doing. Certainly I'm interested and appreciate all your info.

auntnanny. Arikayce is a liposome antibiotic Amikacin that is specifically for MAC. Because it is delivered as a liposome, it is delivered directly to the receptors in the lungs and it bypasses the systemic type of reaction that would naturally occur if one was taking oral meds or even intravenous meds. That is why it was recommended for me because of heart rhythm condition that I have. This medication still has many side effects for which it needs to be carefully monitored, but thankfully heart rhythm is not one of them.

@woot I have a Pari Vios also and it takes about that time to nebulize my saline 4ml. Nan

Thanks, NaN. Nice to know I’m not doing something wrong.

@auntnanny after being on the big 3 for a year w no improvement, an inhaled medication Arikayce (Amikacin liposome inhalation suspension) was added to my regiman of meds. I was diagnosed w bronchiectas, MAC/MAI and Pseudomas. My doc said its good for knocking out Pseudonomas too. I have been MAC and Pseudonomas free for 5 months, but I never experienced the violent coughing you speak of. I have had absolutely no problems w the Arikayce aside from a low voice for a few days when I started.

@woot i bought and used the Pari LC Sprint reusable handset. The site says 5-6 minutes. Its reusable, boilable (I do) dishwasher safe (I don't) and says its good for 6 months. From Just Nebulizers $15.95, includes tubing.
Always check with your doctor. Yours is one of the best.

@woot I was prescribed Arikayce (Amikacin liposome inhalation suspension) and the Pari eRapid Nebulizer system is the delivery method that came with the meds. One day I tried my saline in it and wow, 2 minutes! That's when I called the company and found out it was OKAY to do this and 2 minutes was the usual time for saline. They cautioned me to clean it real well as the saline is sticky. They (Nebology) work w your insurance but its listed at $160 for the handset and $879 for vibrating mesh technology compressor. Anyhoo, that's some info.

margiebanks……. thank you again for sharing with me. I'm planning to contact Mayo doctor when I finish this session of Toby to say "it's just not working for me".

sounder27 Thanks you much for the information you shared. Appreciate it

@auntnanny You're welcome, we always need to mindful that we all respond differently to medicines. I wish you the best of health.

@ginak Hi there! I am so glad that you got your saline. Like @suinmn said; use it on a level you can tolerate. I built up a tolerance to it so now it doesn't give me that beneficial cough. But I feel like the salty environment is still good for my lungs.