Brinsupri follow-up

@phoenixrises I have been on Brinsupri for 5 months taking the 25 mg dose. Almost from the beginning I experienced very chapped lips and dry skin on the bottoms of my feet. About four months in I started having blotches of red scaly skin on my eyelids (weird). I started splitting the 25 mg pill in half and the symptoms have improved. I was reluctant to decrease the dose because my energy level had improved a lot with the 25 mg. I’m hoping the lower dose will be sufficient to maintain the improved energy level. I am also losing hair around the crown of my head but hope this will level off. Someone said talk to a dermatologist but I was unaware there is any help for hair loss. Can someone out there please respond with information on that topic?

@maryjanechilds You may want to talk to your pulmonologist. My docs are "cautiously and selectively prescribing" Brinsupri, and according to them the literature actually reported better results with the 10mg dose. They were surprised so many other docs are using the higher dose.
Maybe you can have the same results on 10mg?

@maryjanechilds You may want to talk to your pulmonologist. My docs are "cautiously and selectively prescribing" Brinsupri, and according to them the literature actually reported better results with the 10mg dose. They were surprised so many other docs are using the higher dose.
Maybe you can have the same results on 10mg?

@sueinmn @maryjanechilds

From New England Journal of Medicine article:
"Both brensocatib 10 mg and 25 mg demonstrate similar efficacy in reducing exacerbations, but the 25 mg dose provides additional benefit in preserving lung function (FEV₁). The key difference is that only the 25 mg dose significantly slowed FEV₁ decline compared to placebo."

I have been on brinsupri one month. I’m hesitant to share so soon how much change I have noticed in my quality of life because they say 2-3 months before expected “changes”.
These are things I have experienced. Decreased mucus production, decreased fatigue, decreased coughing, decreased use of cough drops. I must share at the same time I started on brinsupri, I had also started on stiolto to to control my worsening cough this past year. but I am hopeful about feeling better and staying healthier. my regimen of 7% nacl nebs and act twice daily remains the same. and i have been mac free for almost 3 years.but still have BE.

I had such a draining experience with inLighten, but if there’s one silver lining, it’s that I realized we don't actually need their program at all. Honestly, your doctor can just send your prescription straight to the specialty pharmacy—that’s where the real magic happens anyway.

It feels like inLighten is just a middleman pretending to help, but if you look at the comments here, they’re mostly just pointing you toward pharmacies like Panther. Save yourself the headache and the endless weeks of phone tag. Just remember: these manufacturers only want to sit in the middle so they can own your data. Skip the middleman and keep things simple.

@crepass Hi there great to hear it is helping you as you have only been on it for one month.Where they state 2-3 months, so looks like after this period your sysmtoms will be more improved.
Iam based in Australia and unfortunately it is not available here yet.
Apparently it targets Neurophic Inflammation in the airways which reduces muccus production.
Would love to hear how it is all going for you now, as it gives me hope for the future.
King regards
Broderick.

@brody89 So, I have been on for 7 months now. I have had 2 exacerbations (maybe 3) since then, but i hang out with 5 grands under the age of 6 who are germ carriers and i don’t wear my mask near enough. the good side is that , My pulmonologist puts me on antibiotics fairly quickly and I bounce back with diligent airway clearance. This “bouncing back” is new since being on brinsupri. this past 2 months, my bp has increased , will be working on that with my pcp. hope you are able to get the medication soon. It has been so good for my quality of life.

@crepass Hi thanks for your reply.Could you please till me the cost of this medicine as i believe it is rather expensive.
I have exacerbations every day and to hear that you have only had (3) in 7 months is amazing, i hope i have the same or similar benefit.
Stay well.