What's your experience wtih Brinsupr (brensocatib)?
It seems a bunch of us have started Brinsupri. Let's use this thread for discussion. If you are taking Brinsupri have you noticed anything different, including changes to bronchiectasis or side effects? How long have you been on it?
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@cwal Thanks, I did test negative for covid/influenza. I'm now sure it's a virus because my husband is now sick.
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1 Reaction@pumpkin8088 Thanks I plan to.
I’ve been on Brinsupri for going on two months now. I have a little dry cough once in a while, and while continuing my air clearance every day, hardly anything comes up. I feel good. Occasional chest heaviness or shortness of breath is alleviated with the levalbuterol inhaler. Of course (as many of you can imagine) in the back of my mind I have a fear that mucus is just building up, not coming out, and I’m heading towards being sick again. I plan on asking my Brinsupri case manager next time she calls me to see if lack of mucus after air clearance is common. It is really unbelievable the wonderful support they provide for people who are taking this med. And, the pharmacist at the specialty pharmacy has been wonderful. If I get any insight from them in the future, I will share.
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7 ReactionsPlus higher blood pressure which stabilized to my normal about 115-120 for the last month.
@softballqueen
Get tested for RSV. Kicked my butt in January. You will need to go to a emergency clinic for that. No over-the-counter test for RSV as of yet. It is a lot like Covid. I literally did not have the energy to get off the couch for 2 full weeks. Then it was gone. Infectious Disease sent me a prescription for antibiotics, and it helped immensely with the breathing issues. Of course, then a NTM showed up, Burkholderia. Down another month.
Agree with cwal, sounds viral. I had covid in February and had a horrible sore throat and headache. Keep it up! I noticed improvement after just 1 month and now 2 months in, I am truly amazed and thrilled at the results. In talking with the Panther RX pharmacist, I learned many people see an improvement in the 2–3-month time frame. I was ahead of that curve, and some don't see major improvement for 6 months (per scoop). The pharmacist also told me that the most common side effect they are seeing is dry skin. My chronic cough is virtually gone, my energy level has improved 80-90% (also taking SOL Nutrition GOGO supplements for energy), and I am producing minimal mucus. The most interesting change is: pre Brinsupri, when I nebulized I coughed a lot and went through a lot of Kleenex, mostly saliva and upper airways gunk. Now, I nebulize and produce very little (if any) mucus and on some days about 3 hours later, I can feel mucus moving into the center of my chest and up and out without even coughing. I am interpreting this as clearing from deeper inside my lungs and cilia that may have been immobilized due to inflammation are starting to work again. This is happening less frequently now, but I believe I have been clearing old, impacted mucus. If inflammation is primarily caused by the neutrophils, Brinsupri should work very well. I do have mild eosinophilic asthma but it's very mild and so have not had any of those episodes in over 2 months.
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2 Reactions@1fancydancear I actually have been vaccinated against RSV. Sorry it got you.
@kathyjjb good information, thanks.
@softballqueen
I was also vaccinated for RSV. Being vaccinated doesn't mean you will not contract it.
It was highly unpleasant. I have never ever been as tired in my life. It was worse than Covid. However, I was able to avoid a hospital stay with the actions of my Infectious Disease Doctor.
Plus it opened the door to a two-month recovery from Buckholderia, a popular NTM with my lungs. The NTM appeared just as I was getting over the RSV.
@1fancydancear Wow I didn't know you could still get it. Thanks for the info.