Brinsupri follow-up

@mariegrace Not true. Published literature says: “Upper respiratory tract infection” is among the most common side effects (≥ 2%) for Brinsupri.

So as not to confuse things further, it'd be wise to limit discussion to actual experienced side effects of those who are on the drug.

I was on Brinsupri for less than 2 months and my hair started falling out. Hair loss is one of the listed side effects. Has this happened to anyone else?

@jassa Sorry to hear that's happening to you. In clinical trial data alopecia was reported: roughly 1.5–1.6% of patients on Brinsupri experienced it, versus 0.4% in the placebo group.

Curious how much hair loss are you experiencing? Most people lose 50–100 hairs per day under normal circumstances. Other factors can influence hair loss also such as stress, illness, hormones, aging, coloring etc.

@ana323
Thank you

@scoop
For me I want to know side effects before taking a drug with very little efficacy after 1 year.

@jassa I reported a couple weeks ago that my hair seemed a lot more brittle since I started taking it on 10/4. Well, since then it's gotten noticeably thinner and my eyebrows are also showing signs of thinning. I've recently started having some minor gum irritation as well. I'm not really willing to continue taking it if this is happening so soon after starting it.

@lilianna
Thank you

I've been on brensocatib 25 mg for a little shy of 3 months now. I had nighttime headaches for the first 2 weeks but then they resolved. I also had sneezing fits that never developed into a cold. Also, I had my first episode of hemoptysis (I have bronchiectasis and a mild NTM infection). I'm not attributing the hemoptysis to the drug, however.

On the plus side, I've noticed a definite improvement in my energy level and a decrease in my shortness of breath. So I'll be sticking with it. That is, while I can afford it. Who knows what Medicare will do next year?

I have been on Brinsupri (25 mg) since September 15 after a 2 1/2 year battle with severe bronchiectasis. I am 87 years old, in otherwise excellent health, and have been under the care of Mayo Jacksonville. I have had zero side effects, have regained 10 of the 20 pounds I lost during the previous two years, my energy level has totally come back, am now sleeping a normal 7-8 hours rather than 9-11, my appetitive is improved--in short I am a new man and can't say enough about the drug. I used to have 10-15 violent coughing spasms (exacerbations) per day--I am down to one, maybe two with some mucous production.

@pagechapman …..as someone who just started taking Brinsupri, this gives me so much hope and encouragement. Thank you for sharing.