Brinsupri follow-up

@irenea8 "To me it seems the drug has alot more side effects than we had anticipated." That's why I have been sitting on the sidelines listening. There is a big difference between clinical trials on a carefully curated population and prescribing to the population as a whole, with different severities of disease, many other health issues, sensitivities, and medications. I always think of a new drug release as Testing - Phase 4.

@irenea8 To clarify, LRI after dental work isn’t unusual for those of us with lung disease. I’m not sure how Brinsupri might influence that.

As for side effects, I really hope everyone taking Brinsupri continues to share their own experiences. The comment that it has “a lot more side effects than anticipated” felt a bit vague to me. Are you currently on it, and have you experienced side effects yourself? I hope it helps you far more than it harms. For now, it’s the only FDA-approved option we have for this disease. So far, it has helped me more than harmed me, but it's still early.

@sharonednaramsey My understanding, simplistically.

We with bronchiectasis have overactive enzymes called DPP1 (neutrophil related which is a type of white blood cell). These enzymes make airway inflammation worse causing more mucus, leading to more infections, and more lung damage. Brinsupri blocks DPP1. As a result, the airways are less inflamed, and less prone to flares. With hope and time, we experience less inflammation, fewer exacerbations, better lung function.

@carlynic FYI, I noted with interest that an AK (actinic keratosis, common precancer from chronic sun exposure) developed on my chest, about 7-8 weeks into Brinsupri treatment. Years ago my dermatologist prescribed a tube of fluorouracil topical to be used on such spots for in-between visits. In other words, AK are not new to me and sadly they are more common than I'd like to admit. I'm on every 6 month skin checks. Anyway, I applied it as directed, the spot scabbed over and fell off. I plan to have the dermatologist check it soon.

Given our increasing age, it's hard to know what caused this. Was it the Brinsupri? Years of sun on fair skin? Genetics? A mix of everything or something else? We read about so many co-morbidities here that it’s tough to sort out what causes what. So I stay alert to subtle changes and keep moving forward.

@scoop thank you. That is what I understood. I have been on Brinsupri for almost 2 months now. I haven’t seen a positive result yet but I have experienced side effects of headaches and increased blood pressure. I read on one of these sights that it could take 3/6 months for positive effects.

@sueinmn - I'm on a roller coaster about Brinsupri. I've had numerous squamous cancer requiring Mohs surgery. I also have lichen planus that flares up in my gums--I've lost several teeth and the gums are not strong enough to do dentures or implants. Since these two things are pronounced side effects--"thickening of the skin and gingivitis" I'm not sure what I'll do moving forward. I see my pulmonary doc Tuesday so I know we will be having a conversation about Brinsupri. Just not sure which way to proceed.

FDA's FAERS database for reporting drug side effects. Search for Brinsupri. Both patients and health providers report side effects here. There are numerous ways to slice and dice the data.
https://www.fda.gov/drugs/fdas-adverse-event-reporting-system-faers/fda-adverse-event-reporting-system-faers-public-dashboard
https://fis.fda.gov/sense/app/95239e26-e0be-42d9-a960-9a5f7f1c25ee/sheet/33a0f68e-845c-48e2-bc81-8141c6aaf772/state/analysis

@scoop
Thanks for the clarification about the dental work Scoop.

People have been sharing their experiences here and I hope they continue to do so since this is a new drug. I have been saving and keeping track of the side effects vs benefits reported. I am seeing a lot more side effects reported than I personally anticipated with Brinsupri. I have not tried Brinsupri yet. Remember I do not have Part D as yet. I do not think people should talk themselves out of the side effects some of which seem fairly concerning to me. BUT of course with any drug you need to weigh the pros with the cons and decide.

Hi all,
I have been on Brisupri for 2 months now. When I started I was in bad shape, racing heart and short of breaths, and the symptoms lasted for months.

To me any drug will take some time to show real good or bad results. Some reaction at first, sure it could happen. But to sort out what is or what is not related to Brisupri would not be a very clear cut.

After 2 months now:
--I feel my airway is a lot clearer.
--It is easier for me to cough out mucus, but I am not sure if it is solely related to the drug or a combination of using a vest.
--I don't have short of breath now
--I cough very little now only when mucus is in the way. Last Sataurday I sat in a 3 hours opera, but I only cough twice.

After a few days of taking it, I have some pimples on my right shoulder, not sure if it is related, because in winter time, my skin gets dry. After I used some body lotion they disappeared.
Well, here is my experience so far.
To me you have to try yourself to see if it works for you. I am not a person to jump on drugs, I resisted taking any drugs before I got sick in my 70s. and I was lucky that I could do that. But now I think at my age, I need some quality years. If this drug is promising to bring this, I would try .

Take care and let's continue to share our experience to help one another on this journey.

Ling

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