Discussions

New medication

September 22, 2026

3 192

I'm new to the community and have had BE for 15 years which has gotten worse over time. I recently started on the new medication, Binsupri, and am having lots of side effects, i.e., headaches, nausea, lethargy. Has anyone else experienced these side effects?

Thanks

Latest Activity: September 25, 2026

Replies

MaggieH

Hi Morgan,

I’ve been on Brinsupri for 14 months (with a pause for 3 months due to multiple lung infections ). Unrelated to Brinsupri) I’m sorry you are having a hard time. How long have you been on it? Are you on the 10mg or the 25mg? Are you part of the Enlighten Support Program? They are wonderful about letting us talk directly to the Pharmacist about side effects. I did have nausea and headaches in the beginning but they subsided. I have some other side effects , but I am trying hard to stick with it because for me, the benefits do out way the side effects.
Warmly , Maggie

Latest Activity: September 22, 2026

Comments

Morgan

Thank you for your comments; I have been on the Brinsupri for 5 weeks and with a long delayed foreign trip on the schedule in a month, I decided to go off the medication to see if I could regain some of my usual energy and after two days I feel much better. I plan to go back on the Brinsupri after my trip and see if I can tolerate it again. I was glad to hear that a second try might be more tolerable.

Latest Activity: September 23, 2026

Ksmiles123

Maggie H,

Hello! Thank you so much for sharing your experience with the community! I so greatly appreciate you mentioning the inLighten Program. Below is information on this support program:

The inLighten Support Program is designed to assist patients who are prescribed medications such as BRINSUPRI or ARIKAYCE. It offers one-on-one support through dedicated coordinators who guide patients through treatment initiation, enrollment, and ongoing follow-ups, ensuring they understand next steps and have access to necessary resources.

Key Features:

Personalized Guidance: inLighten Coordinators provide individualized support, answering questions about medication delivery, administration, and treatment schedules brinsuprihcp.com.
Enrollment Assistance: Patients can enroll in the program by completing an enrollment form in-office, online at the program website, or by phone with a coordinator brinsuprihcp.com.
Ongoing Follow-Up: Coordinators maintain contact with patients throughout their treatment, offering updates, reminders, and guidance to ensure adherence and address concerns brinsuprihcp.com.
Educational Resources: The program provides information about the medication, potential side effects, and best practices for managing treatment insmed.com.
Access Support: inLighten helps patients navigate insurance coverage, prior authorizations, and other access-related questions, though coordinators do not submit paperwork on behalf of prescribers brinsuprihcp.com.

You can call the dedicated support line at 833-LIGHT-00 (Monday–Friday, 8 AM–8 PM ET) to speak with a coordinator brinsuprihcp.com.
Please let us know if you enroll in the program- we would love for you to share your experiences. Thank you in advance.

Latest Activity: September 23, 2026

Ksmiles123

Morgan,

Hello! Wishing you a wonderful trip!! I hope that the 2nd attempt at Brinsupri is more tolerable for you. I am glad that you now have the information on the inLighten Program.

Latest Activity: September 23, 2026

Ksmiles123

Morgan,

Hello! Welcome to the community. I am sorry to read about your side effects? Are you on 25mg, or 10mg? I have heard that other people are experiencing headaches as well. Have you discussed this side effect with your healthcare provider?

Latest Activity: September 22, 2026

Morgan

I greatly appreciate the feedback on my experience with Brinsupri. I have only been on this medication for 5 weeks at 10mg. The daily side effects haven't been worth it since it has been effecting my daily life in negative ways, i.e. nausea, headache, low energy, etc. So I stopped it three days ago. The withdrawal (I think) is horrendous with the worse nausea, headache, muscle aches, etc. I'm hoping I can tolerate the withdrawal consequences for a better experience in the long term. Has anyone else gotten off this drug with similar results?

Since it is hard to communicate with my lung Dr, so this forum is a so very helpful. Thank you, Morgan

Latest Activity: September 25, 2026

Comments

MaggieH

Morgan, I discontinued for 3 months, but had no issues going off. The Brensupri pharmacist at the Enlighten Program did say it stays in your system for a while. I do hope you feel better and have a wonderful trip.
Maggie

Latest Activity: September 25, 2026

Ksmiles123

Morgan,

Hello! I hope that the discontinuation of the drug symptoms pass quickly. I have not heard of this scenario before. Were you able to contact the InLighten Program, sponsored by Insmed? I want you to feel better as soon as possible.

Latest Activity: September 25, 2026

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