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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for htolan @htolan

@picartist It arrived at my door a week after I asked my doctor for it. I had no copay. My Aetna Medicare was easy. I am a State of Illinois Retiree and our plan, as far as medication, is pretty good.

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@htolan
Can you specify what you mean by Aetna Medicare was easy? You have Aetna Part D plan or what they call Silver Script? Or you have some special plan due to being a St retiree?

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Profile picture for pa 111 @pagechapman

Insurance for this is very personalized. It all depends on your plan with Medicare or your secondary. I have Part D as well as an AARP/ Medicare RX plan and other than an initial $1500 out of pocket charge I am fully covered. I am a patient at Mayo Jacksonville and had no problem getting a prescription from my Doc there.

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@pagechapman
which Part D plan?

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Profile picture for irenea8 @irenea8

@htolan
Can you specify what you mean by Aetna Medicare was easy? You have Aetna Part D plan or what they call Silver Script? Or you have some special plan due to being a St retiree?

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@irenea8 It is a Medicare advantage plan. It’s a large group since it includes all Illinois retirees. I was a teacher/administrator and there are a lot of us.

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Profile picture for pa 111 @pagechapman

Insurance for this is very personalized. It all depends on your plan with Medicare or your secondary. I have Part D as well as an AARP/ Medicare RX plan and other than an initial $1500 out of pocket charge I am fully covered. I am a patient at Mayo Jacksonville and had no problem getting a prescription from my Doc there.

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@pagechapman Thanks, that is exactly my plan and carrier also. So $1,500 out of pocket which I presume is a yearly fee for the meds.

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Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

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I am not yet sure it is a yearly fee. I am no expert on insurance, but I was hopeful that maybe it was a one time fee. I probably won't know for sure until we get to the first of the year. It may also come under my annual out of pocket which maxes at $2,000 I think. I might also add that the people at inLighten, which is supposed to provide patient support on all this have been useless.

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

BRINSUPRI was proven to reduce lung function decline
Studies have shown that lung function naturally declines over time for everyone, but people with bronchiectasis experience greater decline. In the ASPEN study, BRINSUPRI 25 mg was shown to help reduce lung function decline when compared to placebo.
Reduction in lung function decline chart
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

GREAT NEWS

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

BRINSUPRI
Attention all this is GREAT NEWS
I REMAIN VERY HOPEFUL THAT THE LUNGS WILL CHANGE STRUCTURALLY AS THE STUDY SUGGEST. I WILL ASK MY PULMO ABOUT GETTING ON THE 25 MG. I AM ON 10 NOW.

BRINSUPRI was proven to reduce lung function decline
Studies have shown that lung function naturally declines over time for everyone, but people with bronchiectasis experience greater decline. In the ASPEN study, BRINSUPRI 25 mg was shown to help reduce lung function decline when compared to placebo.
Reduction in lung function decline chart
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

https://www.brinsupri.com/brinsupri-study-results/
This is the link to the study results
Jill

REPLY
Profile picture for jillcrawford @jillcrawford

I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.

I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford

Jump to this post

https://www.brinsupri.com/brinsupri-study-results/
Post-bronchodilator FEV1, a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg. The difference in FEV1 between the 10-mg dose and placebo was not significant.
People taking BRINSUPRI 25 mg saw a decline of 24 mL, which was a 61% reduction in lung function decline when compared to a 62-mL decline for those taking placebo.

REPLY
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