Connect
← Return to Brinsupri follow-up
Discussion
Comment receiving replies
Hello,
I was diagnosed with bronchchietasis in 2023. Doing fairly well with inhaler and nebulizer. Since 3/2025 I have had a increase in number of flairs after head colds. Also a increase in coughing daily, fatigue, shortness of breath, dramatic decrease in ability to do minimal home chores. I also have lymphocytic colitis dx. 2023 again flairs making it impossible to leave my home.
I know BE flairs increases lung damage and lung function hence interest in Brinsupri.
My pulmologist and I started the process of getting approval yesterday. I have Medicare A, B and
Supplement Plan G., MedicareRx through United Health Care. Since I read so many of contributors of the forum are on Brinsupri I am reaching out to you:
1. Has Brinsupri significantly improved you lung function, decreased flairs and when you began to improve?
2. I read it may take 4-6 month for approval- experience with approval process, has anyone been denied?
3. I am concerned about serious side effects.
Skin - I have had 2 squamous cell carcinomas (family history of melanoma,) eczema, actinic keratosis (precurser to possible skin cancer). I have full body exams by a dermatologist every 3 months.
Hair loss- I have Androgenic alopecia or Female Pattern Baldness and Telogen Effluvium (TE) and I am being treated with some improvement.
Dental- Tooth loss, multiple crowns, implants ( due to over drilling as a child, teen, adult) In general significant dental problems. I see the dentist every 3 months.
I am interested in your experience on this drug.
For example, problems with coverage, has Brinsupri improved your lung function or not, incidence of side effects and if so management.
Any thing you feel comfortable in sharing with me. I am concerned.
I appreciate you help and look forward to hearing back.
Replies to "Hello, I was diagnosed with bronchchietasis in 2023. Doing fairly well with inhaler and nebulizer. Since..."
@lss111
Hello! If you have not already done so, I would recommend reading through all the previous posts on this thread (Brinsupri follow up). It will be interesting to see how your approval process goes since we seem to have the same everything. My pulmologist and I also started the process of getting approval yesterday and I also have Medicare A, B and Supplement Plan G and MedicareRx through United Health Care. I have the Rx that has the lower premium of their two options. Given your pre existing and the potential side effects of Brinsupri, I would be very wary too! I am also concerned about certain side effects in my case. Let's hope for the best. I am concerned also that United will cover it but that my share will still be too high.
@lss111 ...I was diagnosed in 2013 with BE. Couldn't go more than 2 weeks without antibiotics for incurable lung infection.
I started Brinsupri in August right after it came out. Only 11 days for approval. I've been on almost 5 months. I've noticed a significant improvement in lowering amount of sputum and decrease in color. Lung function test showed improvement. Pulmonologist is extremely pleased.
I have Lupus, with skin problems. No discernable increase in skin problems.
Dental problems have plagued me for many years. Recent diagnosis of periodontal disease, but 20 years ago a dental surgeon told me the same thing. Can't blame Brinsupri. Dentist is giving me 6 months of at-home intensive care to improve things. Then it is every three months of their care.
I suggest that worrying can contribute negatively to your experience.
I'm glad to hear that you have had improvements in some treatments. I would recommend starting Brinsupri so that your lung functions have a chance to improve, too.
I do get side effects of nausea from some of my antibiotics with other meds and use ginger chews. Anti-inflammatory diet is helpful, too.
@lss111
Thanks to all.
Connect
@lss111
Q1. Don’t know yet. I will probably find its effect on lung function in march when I visit NJH in Denver
Q2.i am on month four. My husband says I cough less. There are days I don’t cough except morning when I do my AC
Q3. As for side effects- my blood pressure went up but not to a level to be treated( I was a low pressure person) and my pcp and the pharmacist from the specialty pharmacy said I could get blood pressure med or change brinsupri from 25 mg to 10 mg and see. So far so good.
Q4.hair loss- no more than before hair loss. Dental care- I see my dentist for a check up and dry teeth cleaning every 3 months.
Q5- it took literally a week for my insurance to approve brinsupri and one day to renew the prescription for 2026( I have Aetna Medicare advantage ppo)
I understand all your concerns because they appear with every new medication prescribed. My BE is progressing so I take the med and watch how it affects me and hope it helps.