Connect
← Return to Brinsupri experience after 3+ months
Discussion
Brinsupri experience after 3+ months
MAC & Bronchiectasis | Last Active: 21 hours ago | Replies (210)Comment receiving replies
I was diagnosed with BE in 2020 and with MAC two years later. I did the “Big Three” antibiotics for nine months but still tested positive for MAC. I was taken off the antibiotics but felt okay. A year later I tested positive with pseudomonas and have been constantly fighting it. I went to Mayo Clinic in Rochester, MN and my pulmonologist there put me on inhaled Colistimethate which I have been on for over a year. I do airway clearance using an Aerobika and nebulized 7 percent saline followed by the Colistimethate twice a day. I have had some setbacks including two hospital stays with pneumonia and four two-week outpatient rounds of IV infusions of Cefepime due to BE exacerbations. In January of this year, my pulmonologist recommended I start taking Brinsupri. In February I started the medication and was told not to expect any improvement until at least after the first month. I have just started my fourth month and can really see the difference it has made. My airway clearance is still very productive but I seldom cough during the day. My sleep used to be affected by lots of coughing and I am no longer dealing with that problem. I feel the Brinsupri is working well for me and luckily I am not exhibiting any side effects!
Replies to "I was diagnosed with BE in 2020 and with MAC two years later. I did the..."
@ja24 I pray you keep doing better. I am almost fighting like you with the same exact bacteria psuedanoma aerigenosa is my demon for now. I also had upper left lobe cancer which was resected . Had a battle Jan Feb this year on IV cefepime 2 weeks but my nuetrophils dropped very low and white count 3.72. I have no symptoms of imflammatory at this moment . Scared to go on brinsupri due to I seemingly get sideceffects to everything. And nuetrophils are low so brinsupri is suppose to do something to the nuetrophils enzymes. Im afraid to try it. Any advise . Or thoughts on this. Minn. Mayo seems more on top of follow through with patients. I feel mine do not explain what this PA was to me . Had no idea of this. I am recently experiencing extreme fatigue tiredness . Exercise intolerance and light headed ess.
@ja24 Has it helped with the Pseudomonas infections?
Connect
@ja24 This really got my attention "My sleep used to be affected by lots of coughing and I am no longer dealing with that problem." I wake 2 to 3 times a night to clear my bladder and then have to clear my mucus to help me go back to sleep...hopefully back to sleep.
Glad to hear the Brinsupri is working well for you and no exhibiting side affects.
I have not done the antibiotics. I went from a small load of intercellular to nearly nothing showing within the sputum testing.
I am hoping should I, with my pulmonologist, decide it is time to try Brinsupri....it will work for me.
Barbara