Connect
← Return to Brinsupri follow-up
Discussion
Comment receiving replies
I have been on brinsupri for 2 1/2 months. I had such high hopes for this new medicine but unfortunately I think I need to stop taking it. My cough has gotten so much worse and a lot of wheezing going on. A month ago my doctor had me take a round of prednisone because of the wheezing. I’ve been coughing up more phlegm but it’s usually during the night, which is a nuisance. Is there anyone else out there who has had similar results? I also do Ohtuvahre and the levabuteral/ saline with a nebulizer twice a day.
Replies to "I have been on brinsupri for 2 1/2 months. I had such high hopes for this..."
@faymk Wheezing sounds like asthma, though I have asthma, I rarely wheeze but asthma can get me coughing ALL day long and for months. I take both Brinsupri and recently restarted Montelukast-though it doesn't work for many. For me leukotrienes were always an issue, particularly in the spring and fall. I started Brinsupri 3 months ago and I started noticing an improvement at about 4 weeks. That's not really that unusual and I believe it has to do with the extent that neutrophil enzymes impact one or another. Unfortunately, I'm now getting skin issues. Panther RX pharmacists are hearing that many are seeing effects within the 1-2 month timeframe, but not everyone. I think it's worth a call to INSMED, who continue to collect data from many of us (and their pharmacy partner, Panther RX). I would think by now they would have a good handle on how many start feeling improvement within 1.2, or 3 months and up through 6 months.
Connect
@faymk
Yes, the Bronchiectasis seemed to get a bit more intense before it got better. 6+ months before full benefits are realized. Sometimes it felt like two steps forward and three steps back. A lot of plateaus. Even on Brinsupri over eight months I often wake up in the morning with a cough feeling the need to clear my lungs. How often are you doing airway clearance? My new record is being able to use the nebulizer and clear my lungs in 20 minutes! Previously unheard of.