Brinsupri follow-up

@heidi0974 No, I don’t think so. I have mild BE, and so far I’m not really tired from the disease unless I’m sick . Also, my 02 is generally good and doesn’t dip too much unless I’m sick . My biggest symptoms have been the thick mucus & constant coughing . Since Brinsupri , I’m producing less mucus, which helps me cough less. Also, the consistency of my mucus has changed - it’s rarely thick. I’m on 10mg. Good luck to you !!

@cholash Thanks much. I discovered after testing I have bronchiectasis with a severe MAC infection. My cough is getting better and I’m doing ATC twice daily. I’m in my final (9th)week of an antibiotic,with starting the Brinsupri as well. Much good luck to you.

I have been feeling much better since starting Brinsupri in October. Two weeks ago, though I caught a sinus infection, and while the infection itself seems to have cleared after a course of amoxicillin, I believe I now have a bronchiectasis exacerbation. It is not debilitating, but it is annoying. Therefore, it’s back to the prednisone for a week or two. Since starting the prednisone four days ago, I don’t think I’m much better, but I’m certainly not getting worse. At least yesterday I was able to take a 16 mile bike ride with temperatures in the low 40s, so I can’t be that badly off.

I have been feeling much better since starting Brinsupri in October. Two weeks ago, though I caught a sinus infection, and while the infection itself seems to have cleared after a course of amoxicillin, I believe I now have a bronchiectasis exacerbation. It is not debilitating, but it is annoying. Therefore, it’s back to the prednisone for a week or two. Since starting the prednisone four days ago, I don’t think I’m much better, but I’m certainly not getting worse. At least yesterday I was able to take a 16 mile bike ride with temperatures in the low 40s, so I can’t be that badly off.

Brinsupri Update! I started Brinsupri (10 mg) 3 weeks ago on thanksgiving day. Not sure what is going on but I feel much better!!! I was really dragging prior to starting...I am battling Bronchiectasis, weak heart (30 ejection fraction, and neuropathy (caused by Linezolid)! I was extremely short of breath and had zero energy. I am still sob but not as bad as before. My coughing is not as bad as it was prior, and I may be coughing up slightly less lung crap. I have had no side effects up to now and can actually do some things around the house. Hopefully my improvement will continue. Thank you Brinsupri!!!

PS: First time I saw SOB in my records I wondered what I had done to offend those people!!

I have been on Brinsupri for over a month. I have successfully treated my Mac for over two years now. I have Bronchiectasis and chronic pseudomonas. Since starting this drug I have been having continuous positive results. My coughing is down about 70%. Much less mucus. Fatigue is better. Those are wins, wins for me. Each day seems to get a little bit better. I have had so many flare-up’s, even been on a pic line, and am currently on arkcayce three times a week, but this is the first in terms of quieting down my symptoms. I am on 25mg.

I have been on Brinsupri 25 for six weeks, My Mac has been clear for 18 months, I am on oxygen at level 3 ,
24 hours a day , I do the vest every morning for 25 minutes. My blood pressure is low, no headache , no skin
thickening , already had DRY skin. My coughing is down from 5 times for 30+ minutes a day to once .
My energy is better and I am sleeping . No weight gain yet, but am no longer throwing up from coughing.
(5'7 / 105 lb so skin and bones . I have high hopes! BEST EFFECT can sleep not sitting up.