Brinsupri follow-up

I am a retired physician and take care of my wife who has had Bronchietasis for years. We are delighted to see how Brinsupri has helped to improve her overall health. The relentless coughing is substantially improved with no change in the frequency of pulmonary clearance. It has demonstrably helped to improve her appetite, sleeping, and has curtailed weight loss which all factor into "staying healthy" and that could well impact your response to viral pathogens. It's almost 4 months now and I suspect she has a better immune response to colds despite her being colonized with pseudomonas and MAC for years. Dealing with this requires a holistic approach that focuses on good medical care, pulmonary toilet, routine observation, adequate sleep, diet, and positive thought. For me as her caretaker, I see and hear the difference and hope it continues.

@scoop I was really hoping to see the replies to your post , but I finally gave up because of all the Medicare /insurance posts . Maybe the insurance questions , etc should be a separate post for Brinsupri , as I don’t think this was what you were asking ?

@sueinmn Yup, had to chuckle at this one "If a place seems dirty, we leave. Chuckled because....I do/have done that also. The bathroom is one good sign of ..... turn around and leave/walk out of the restaurant. One knows that immediately due to the first visit being the bathroom to wash ones hands.

Yes...agree about the food borne illnesses especially with buffets (my thoughts were/are who is breathing on everything plus touching the utensils)....and then who is in the kitchen doing what.
I mostly try to go to Mom and Pop local restaurants...but I do go to others also that in my mind they (hopefully) are doing things right, have high standards. Hard to really know however. I have recently ventured out to a buffet but go when it is just me and another table or two....and they have had to put out fresh for the evening crowd. I also will go to a buffet as long as I am there as soon as it opens. So far handling this risk taking has been O.K .......so far.

I just recently decided to at least have a treat of coffee out once in a while. I'm not really a coffee drinker but enjoy it once in a while. I have ordered bottled water when eating out.

Lately I've been telling myself that I had the BE and an infection (I was having to clear my throat in the mornings and what came up once in a while was a green pus looking substance...) long before it became most obvious something was wrong and during that period of time I didn't get sick with colds, flu etc,......so....I've told myself to consider that and use it as a guide to how careful I have to be especially since I have been able to, so far, keep the Intercellular at a low load and am doing much to help get the mucus up and out. My mucus is no longer that green color and has not been that way for two years. The mucus now is light yellow and then goes to clear.
Thanks Sue for your reply, time and sharing your decisions.
Barbara

@encourage After a month in on Brinsupri, I’m delighted to read of your wife’s progress after longer treatment. I was Dx with BE and Mac a couple months ago. I started week five of Brinsupri today. My cough has already improved, and I attribute much of that to ACT also. Thank you for posting. Jeanne

@sueinmn …Sue,I’m in learning mode still, and after watching the video with Jennifer Honda you referred me to on large concerns, and smaller concerns, a large concern for me ,with diagnosed MAC and BE is the water I drink. I’m a big water drinker, mostly tap, but I’ve learned the bacteria resides in the plumbing. Do I assume correctly from here on out it’s bottled spring water, or boiled tap water? Thank you in advance. Jeanne

@cholash Oh gosh, not even sure what I was asking anymore?! I agree off topic conversations are derailing and frustrating. It happens easily I am afraid. Some moderators on other boards I've participated will move conversations to where they belong but that is a time consuming process. If you have a specific question you think I might be able to answer please direct message me.

@heidi0974 Option #3 is filtered tap water. Some people use a LifeStraw or similar pitcher. We have opted for an undercounter 2-stage filter that feeds directly to a small tap at the sink. The first filter is a charcoal filter to remove larger particles. The second is .2 micron filter, which removes even NTM. If you cannot install the undercounter version due to space, or being a renter, there is a countertop version.
For details, take a look at this longer discussion about filters:
https://connect.mayoclinic.org/discussion/what-do-you-do-when-seasonal-bugs-upset-holiday-plans/

@scoop You had asked how people were doing on Brinsupri . I’m
on it, so I was looking forward to the responses .
Instead , people went totally off topic , and unfortunately your question was totally lost in all the chatter . Too bad ..,

I can't find a pharmacy that will fill the prescription for a reasonable price. I got quoted 7,600 for one month supply. Any suggestions?

Look into the Assistant Fund