Brinsupri follow-up

Posted by scoop @scoop, Sep 29 12:21pm

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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Profile picture for lilianna @lilianna

I was at NJH last week and Dr Griffith sent the prescription to their pharmacy where I just signed my request. Otherwise I did not have to do anything else. It was 09/25 and actually they must have sent it to my insurance ( Medicare advantage ppo Aetna) the same day because it was approved 09/25. I was told someone will contact me in about 10 days and upon the delivery I must be present to sign the delivery. No one has contacted me yet. I am waiting and hoping it will help because unfortunately the ct I had at NJH showed progressing BE which depressed me- I do whatever I can and mucus does not move sitting there like glue. I was told to do AC 3-4 times a day. I started yesterday and my chest hurts, my throat is sore and I practically can do chores between. I hope I will find a way to stick to the routine and live life. May be soone is in the same situation and has advice- would be grateful.

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@lilianna How frustrating it must be for you with "mucus sitting there like glue,"
After reading that I had a thought about what I had happening with me. Don't know if this is something to think about or possible to 'cake up the mucus, however, I was sleeping with my mouth open at night and the mucus was so think and sticky and hard to get up and out. I think if I hadn't found my way to taping my mouth shut {before I was diagnosed with BE} at night with 3M Micropore tape, (as scoop would say, the size of a postage stamp) it would have possibly caused greater problems for me. I think it was drying me out with sleeping with the mouth open. I take it you do drink enough water also. Do you know if you have been sleeping with your mouth open?
Just a thought........ and not a scientifically supported thought but I think sleeping with the mouth open dries the airways and can cause a greater risk of respiratory infections.??????
Barbara

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Profile picture for lilianna @lilianna

I was at NJH last week and Dr Griffith sent the prescription to their pharmacy where I just signed my request. Otherwise I did not have to do anything else. It was 09/25 and actually they must have sent it to my insurance ( Medicare advantage ppo Aetna) the same day because it was approved 09/25. I was told someone will contact me in about 10 days and upon the delivery I must be present to sign the delivery. No one has contacted me yet. I am waiting and hoping it will help because unfortunately the ct I had at NJH showed progressing BE which depressed me- I do whatever I can and mucus does not move sitting there like glue. I was told to do AC 3-4 times a day. I started yesterday and my chest hurts, my throat is sore and I practically can do chores between. I hope I will find a way to stick to the routine and live life. May be soone is in the same situation and has advice- would be grateful.

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@lilianna 7% or 9% hypersaline?

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Profile picture for scoop @scoop

@lilianna 7% or 9% hypersaline?

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@scoop 7% my normal. Is there 9%? At NJH they used 10 % to try get a sputum sample- harsh on throat but I spit something.

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I received a call today from the specialty pharmacy- they recorded all the meds I take, went through all side effects, told me my copayment ( $50) and I will get the medication on Friday. I will update how it goes after I start it.

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Profile picture for blm1007blm1007 @blm1007blm1007

@lilianna How frustrating it must be for you with "mucus sitting there like glue,"
After reading that I had a thought about what I had happening with me. Don't know if this is something to think about or possible to 'cake up the mucus, however, I was sleeping with my mouth open at night and the mucus was so think and sticky and hard to get up and out. I think if I hadn't found my way to taping my mouth shut {before I was diagnosed with BE} at night with 3M Micropore tape, (as scoop would say, the size of a postage stamp) it would have possibly caused greater problems for me. I think it was drying me out with sleeping with the mouth open. I take it you do drink enough water also. Do you know if you have been sleeping with your mouth open?
Just a thought........ and not a scientifically supported thought but I think sleeping with the mouth open dries the airways and can cause a greater risk of respiratory infections.??????
Barbara

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@blm1007blm1007 thank you Barbara. I know when I sleep on the side my moth is closed but who knows. I will try taping but how do you do it? Can you breath through it or the point is not to breath through mouth so you breath through nose only?

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Profile picture for scoop @scoop

@lilianna 7% or 9% hypersaline?

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@scoop I looked again do you mean 9 or 0.9%. I cannot find 9% on line. Thanks

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Profile picture for lilianna @lilianna

@blm1007blm1007 thank you Barbara. I know when I sleep on the side my moth is closed but who knows. I will try taping but how do you do it? Can you breath through it or the point is not to breath through mouth so you breath through nose only?

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@lilianna You take the postage size tape and place it mid center on the upper and lower lips. You are not covering your entire mouth. The point is to not breath through your mouth. We should always breathe through our nose for filtering and moisture.
It is the 3M Nexcare, Micropore Tape. It is a paper tape.
It might be worth a try. More than likely if it is part of the problem it will take a while to see changes, I would think.
Barbara

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Profile picture for blm1007blm1007 @blm1007blm1007

@lilianna How frustrating it must be for you with "mucus sitting there like glue,"
After reading that I had a thought about what I had happening with me. Don't know if this is something to think about or possible to 'cake up the mucus, however, I was sleeping with my mouth open at night and the mucus was so think and sticky and hard to get up and out. I think if I hadn't found my way to taping my mouth shut {before I was diagnosed with BE} at night with 3M Micropore tape, (as scoop would say, the size of a postage stamp) it would have possibly caused greater problems for me. I think it was drying me out with sleeping with the mouth open. I take it you do drink enough water also. Do you know if you have been sleeping with your mouth open?
Just a thought........ and not a scientifically supported thought but I think sleeping with the mouth open dries the airways and can cause a greater risk of respiratory infections.??????
Barbara

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@blm1007blm1007 brrbara again me how do you take your mouth- across or alongside. I would try it

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Profile picture for lilianna @lilianna

@scoop 7% my normal. Is there 9%? At NJH they used 10 % to try get a sputum sample- harsh on throat but I spit something.

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@lilianna You might know this but as indicated within an AI response to the question of : "why would 10% saline vs 7% saline work in loosening mucus with Bronchiectasis?"
the indication was...."A 10% solution would create a stronger osmotic gradient, potentially pulling even more water into the mucus than a 7% solution, resulting in more fluid sputum"
I know you said it was not comfortable with the 10% however did NJH discuss the possibility of you trying the 10% some way....like alternating between 10% and 7%......I wonder??? I wonder if honey would be of help before using the 10%.
Just some thoughts.
Barbara

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My mom received her first bottle of Brinsupri today! Looking forward to great results, prayerfully! Will update you in 2 weeks.

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