Brinsupri experience after 3+ months

Others have shared that they needed to add blood pressure medication when Brinsupri raised their blood pressure. It really is a balancing act.

For me, it means weighing declining lung function and quality of life with more coughing and sputum against adding another medication and increasing monitoring like dental and dermatology visits.

I have needed closer skin checks. After considering the risks and benefits, I feel the improvement in lung function, less coughing and phlegm, more energy, and greater stability make it worth it.

Each of us has to decide that with our doctors.

@luxembourg it would be hard to give up Brindsuprri if it was a big help at first but I suggest seeing a dermatologist as it could lead to something more serious.

@pagechapman I am so glad you gave more information than most. Being 85 myself gives me encouragement as well. Plus gaining weight too. Now if I can tolerate the 10 mg if I can get it and it works for me too I will be one very happy lady.

@pagechapman That is wonderful, "Absolutely no side effects."
Did you start the Brinsupri MAC free, meaning no infection ?
I do somewhat assume no MAC, no infection, before Brinsupri and no MAC after starting Brinsupri with your going down to once a day on nebulizing and airway clearance???
When you say 25-30 exacerbations per day are you saying you were coughing and clearing mucus all day?
Barbara

When I started Brinsupri in September I was probably almost MAC free. A lab test the previous June had shown a major decline in MAC and then the test I took in October showed up as totally MAC free. Nobody can explain how that all happened since a year ago I definitely had Mac. I had been on the big three for a very short period back then but could not tolerate the drugs. I had taken no drugs since April 2025.

Yes, the daily 25-30 exacerbations involved violent coughing and an extreme amount of mucous production. That is what has almost totally disappeared since starting Brinsupri.

@dchristi I see that you’re pretty new to group and just wanted to welcome you. It’s a very helpful group.

@taracronwall Hi Tara, I hope you are feeling better. I’m not on Brinsupri and haven’t followed this thread closely, but have been on Dupixent since last August for a non respiratory autoimmune issue and have tolerated it quite well. Did you start it? I had some knee pain for a couple days after dose for a few months, but that has subsided. It’s given me a partial remission so I’m a big fan. When looking at the side effects on the drugs, I try to focus on percent of people who didn’t get it and usually figure my odds are good. I do keep issues in mind though.
Feel free to pm if you have questions to keep this thread on Brinsupri.

The Brinsupri has made a major difference in the clearance of my lungs and breathing. My blood pressure has raised and am working with my Dr to get they balanced. My liver enzymes have also raised but not sure if it’s related be diet and overweight. I will work through the side effects for all the benefit I get

@pagechapman Great story of the findings of negative for MAC and now your journey with Brinsupri. Thanks. That explained it well, "violent coughing and extreme amount of mucus."

I have a feeling of mucus caught nearly all day long in the throat of which I assume is in the trachea. I wonder if it's some of what comes up each time I try to clear and do clear yet some hangs on until I suck it up or huff cough again. Thank goodness it is not violent coughing and not extreme mucus that I see as yellow when I clear it into a clear solo cup.

Glad to hear all this with your being just four years ahead of me, I am 83. That is very encouraging. I am fortunate to not have any other health problem that could add to and or compromise me and the BE. Do you have other health problems or all clear in that respect?
Barbara

I am just past my three months on Brinsupri 25 mg, in my 13th week. For reference,I’m a healthy 74 year old who had a worsening dry cough, and sudden onset great fatigue starting in early September. After my PCP ordered many blood tests,XRays ECHO and CT scan, I saw a Pulmonologist in October who specializes in Bronchiectasis, He started me on Augmentin, and an Rx for Doxy after that. Although mine is a dry cough, I was able after some work to produce a sputum sample, which by my Nov 24th appt confirmed MAC. He said I was a perfect candidate for Brinsupri. The specialty pharmacy did all the leg work with my Part D plan, and before I knew it I was picking up my first prescription Dec 4th.I was extensively counseled that it was slow acting, be patient, do air clearance twice daily,(that was a must), and keep with the exercise and good nutrition.After three weeks it dawned on me my cough was better.A few weeks later I was gradually regaining my energy. My mucus is thinner helping my air clearance to be productive.In my case I got better and stayed there..,,then a little better yet and stayed there etc. I feel I’m already 75% back to how I felt last summer, which was great. I’ve also had to refrain from dairy which in my case thickened and increased my mucus. I have warm water with lemon, honey or tea in my Yeti all day, and take it to restaurants too.Cold drinks make me cough,so no ice ever. I boil my tap water, and keep bottled spring water always on hand. These have been easy fixes for me because it all helps me feel my best.I hope this helps those of you starting this journey.I feel very grateful for my good care, and this breakthrough drug at just the right time for me. This forum has been a wonderful resource for me, and kept me from going down a rabbit hole of despair when I was first diagnosed. Jeanne