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Brinsupri follow-up
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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@vickied
Try Maxor Specialty pharmacy (which may be in the process of changing its name to VYTL ONE Specialty Pharmacy). Your doctor may have to choose them when prescribing
@pagechapman
Thank you so much. Are you taking it and if so, is it working for you?
@sueinmn Sue you may have seen this post on the other thread:
"Clearing Mucus Plugs"
Posted by deestrada @deestrada, 1 day ago
"My last CT scan showed an increase in mucus plugs in my lungs. I am consistent in my airway clearance protocol, and have been on Brinsupri 3 months. My sputum has diminished considerably since Brinsupri, but mucous plugs have increase. Has anyone had success in clearing mucous plugs and what has worked for you? "
Hoping that for @deestrada that this changes with more time on Brinsupri, nebulizing, airway clearance techniques etc. Loved hearing what @encourage had to say about his wife on Brinsupri.
My concern and what I am looking to understand is how the Brinsupri is working and doing. Could it be drying the mucus up??? Causing dryness in our body.
So glad Dr. Daley is overseeing this to give us some answers once he has received enough data to help with answers.
Looking forward to more information and posts of what others are experiencing...short term and long term.
Want all the best for them and..... us....BE patients.
Barbara
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1 Reaction@blm1007blm1007 It might take longer on Brinsupri for it to have an indirect impact on mucus plugs. It does not directly remove existing plugs. I'd be interested to know if @deestrada takes mucinex to help thin the mucus? Any does the airway clearance include postural drainage after hypertonic saline?
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1 Reaction@blm1007blm1007 Brinsupri and how it operates is outside of my experience. I hope others who are using it can answer the questions.
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1 Reaction@scoop We both had the same questions and thoughts in mind. All is so important. The more we do our therapy, daily..2x a day, the more we figure out what is best for us....our methods, our tools and routine to clear the mucus.
Barbara
@vickie
There are only three pharmacies that dispense the drug. They are Maxor, Amber, and Panther. All of them are specialty pharmacies, part of a limited distribution network. I spent 4/hours talking to Aetna, Silver, Script choice, a Medicare Part D insurance plan. I may have not solved the problem of a switch in insurance but I learned a lot. The Brinsupri assistance plan is now closed for applications but if you were receiving financial assistance it will continue to another plan. I was told there are other assistance plans one can apply for. Check TAFcare.org. If you are on Medicare the out of pocket expenses will be a little over $2000. Expenses other plans have contributed to your total costs also are counted.
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2 Reactions@jassa Hi, I am on arikayce three times a week to keep my chronic pseudomonas away. I had been getting lots of flare ups and the meds just didn’t work, so I was put on a pic line for three weeks. That shut the bug down, but to keep it down, the doc put me back on the arikayce three times a week. I used that same drug to overcome MAC disease. So far the pse
udomonas is underwater. But who knows for how long. Hopefully this new drug, Brinsupri will be helpful/
Has anyone had an increase in coughing on brinsupri. I am on 25mg