What's your experience wtih Brinsupr (brensocatib)?

@softballqueen Great, if you can continue to give it a chance to work, that would be so good. At least you're not having side effects!

I’ve only been on Brinsupri for a couple weeks, but I had headaches for the 1st 4 days or so. I thought it was from the Brinsupri but I figured out that it WASN’T (yay). It was from something else, but had ironically started on the first day of Brinsupri. My luck ha! I wanted to share that after I figured out what they were from, I have no more headaches or any other side effects so far.🤞

@sarahlynn1960 I totally get that. I had increased cough, fever, aching 2 weeks after I started and thought great, the medication is doing that. Nope it was a respiratory virus that lasted 10 days and I know this because my hubs got it too. LOL

@softballqueen
Curious if during the 15 year timeframe between having BE and then 10 years later getting MAC, were you doing airway clearance? Or maybe you did not know to do it.

@scoop No I wasn't because I had been to many doctors everywhere including major teaching hospitals and despite many tests they couldn't figure out what was causing my coughing and shortness of breath. I happened to read in the newspaper about bronchiectasis and requested an MRI and as soon as they did one they found that it I had BE and I was started on airway clearance.

@ursala7
I don't know where you live but if you have Bronchiectasis and/or MAC you need to see a Pulmonologist that specializes in those areas whether you take Brinsupri or not. Even if you have to travel a couple of hours it would be worth it. Regular pulmonologists don't have the knowledge or experience with this disease to manage it.

@ursala7 I’d encourage you to access the” Brinsupri Follow-up after 3+ months”forum for encouraging information from those who started Brinsupri earlier. I’m 75 and posted yesterday, but there are many others too. Jeanne

@cwal Agree, and I live in the MPLS-St Paul area, so you'd it would not be such a challenge, but the one pulmonologist that does have expertise in bronchiectasis in the area is not booking any new patients. I have gone through the bios of every other pulmonologist I could find on the referral list from my primary and none of them mention bronchiectasis in their "scope of experience". I am going to see about Mayo in Rochester - not sure if I need a referral from my doc to get in there.

@ursala7 l turned 90 this year and started Brinsupri last October. Being in month 6 I’m finally seeing results, especially thinner mucus and less coughing. I went to NJRC in 2003. Diagnosed with bronchiectasis, Mac and nocardia and put on the big 3. Have been on big 3 four different times plus pick lines 3 times. Tried arakayce and totally lost my voice for a few days. Quit the big 3 a couple years ago as it was affecting my eyesight. On Zithromax as needed til I started Brinsupri so not an especially fun journey for me. Any improvement for me at this age and stage is a gift. I live in an apartment and fortunately, still drive.

@ursala7
See an infectious disease Dr.