Brinsupri experience after 3+ months

@irenea8 for reference , I’m about to start month #6.
Mild BE, 10mg.
For me , the daily mucus and coughing has been significantly less, although some days it can still be substantial . For example , even the hint of rain always causes me to overproduce . That hasn’t changed. I don’t recall the decreased mucus being as early as the first weeks of Brinsupri , as others have mentioned . For me it took a little longer . In December I caught something that caused a flare . I did notice that I recovered much quicker from it . Usually I have to take Zithromax & a steroid dose pack . This time I didn’t need the steroid . Very encouraging , especially with Christmas . Give it more time , and don’t get discouraged by those that get the fast /immediate results with it.

@scoop I have not started the Brinsupri. Considering things in other areas in taking certain meds or even supplements...I wonder if one might, depending upon each one's circumstances and health, start with the lower dose and try it and then go onto the higher dose if needed?
We shall see how it all unfolds with time and their learnings.
Barbara

@blm1007blm1007 You could always try it and stop if you experienced side effects. What does your doctor advise?

Have not discussed Brinsupri as yet.
It had been suggested to start the antibiotics only, so far.
With the low load and last sputum test results of no indication no finding of bacteria I have not started the antibiotics. I know we can go from negative to positive to negative so I assume it is there hiding at a low load.
Yes, I easily bring mucus up and out. It is less than an ounce of mucus a day, (24 hours) yellow in color. I feel fine...... all is good except the continual need to clear the mucus.
Not having gone up to NJH since Oct. of 2023 and my concerns of who knows what in the "local" pulmonologists I see, I am considering going back up to NJH. Have to reflect some and talk to myself a little bit longer.
Barbara

@patti55 You have a smart doctor. My pulmonologist, who is frequently involved in clinical trials, told me she read ALL of the test reports/research results. According to her, it appears from the clinical trials that 10mg is as effective for most people as the 25mg, but with fewer side effects.
She has only prescribed for a handful of patients (not me) who were having 5 or more exacerbations per year. When I see her in May, we are reserving part of the appointment to talk about how Brinsupri seems to be working in the real world. She is a strong supporter of Mayo Connect and wants to hear how our members are doing and share how her patients are responding.

@sueinmn Nice to hear your doctor is a strong supporter of Mayo Connect, that says a lot. Lucky you. Thanks for sharing that information about her understandings.
I have been told directly, or it has been inferred, by a couple of the pulmonologists I have seen..."stay away." Sad.. I wonder if they have ever even taken time to see how we handle all on the Mayo???????
Not sure if you read what I said above but what you posted confirmed, somewhat, my thoughts regarding how to possibly start the Brinsupri. With many things in life we are sometimes, and many times, told and suggested to start out either slow or with low dosages and then gradually build up if needed and able to.
Barbara

@blm1007blm1007 Barbara, I’ll add that my Pulmonologist also referred me to Mayo Connect for support. He said I could learn so much from other people living with this, on what I could do naturally to help in addition to taking the Brinsupri. And I have.

I have been on Brinsupri since September 11 and after a month I started with tiny red rash all over my trunk as well. I asked my local pulmonologist and he said cut in have and see if it clears up. I did and it cleared up. After 3 months of taking 1/2 a Brinsupri I thought maybe my body would be use to it and I started back with the whole 25 mg. My rash came back. 3 days ago I saw my Stanford pulmonologist who specializes in BE and he saw my rash and said I definitely need to go on the 10 mg. My rash was extending to my arms and legs.

I have been on Brinsupri 25 mg since mid November and recently i am experiencing manic level of energy and sleep disturbances. Due to increased levels of energy I am involved in a huge volunteer project which maybe contributing to my poor sleep. A burning feeling on the bottom of feet also wakes me up. I wonder if anyone else has had similar experiences. I am going to send a note to my pulmonologist and talk to the pharmacist.

I have MAC disease on Arikayce 6 months and doing better inder direction of an Infectious Disease Dr.]. Pulmonologist also following since diagnosis of lung fibrosis/bronchiectasis put me on Brinsupri. After one month I had roseasea on cheeks, excema in area near mouth, and a blister on arm dermatologist thought might be skin cancer. I took myself off the med completely and the last problem has gone away but the two on the face are still present after two month off. I would not advise anyone to take it. The FDA approval was based on a very small pool of people.