Brinsupri follow-up

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

@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.

@spectrumcyclist
Great news! Do you have MAC also as well as Bronchiectasis? Also, as a fellow bike rider, I am interested to know how you figure out your VO2 Max. I thought this was something that had to be measured in an "exercise lab" of some sort.

@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?

@irenea8 Interesting question. My Part D is with someone else, but I have Aetna Part F, and that's who called me, so I assumed they are paying for it. I will know when I get the CMMS summaries. I really don't care iso long as the price is right and I get it. My doc's insurance people always come through.

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

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

@cwal 1. No Mac. 2. Garmin Edge 1040/Quark power meter/Polar heart strap get me the VO2 on the Edge and Garmin Connect.

@spectrumcyclist
I think Brinsupri has to come from a prescription drug plan but perhaps the medigap plan is somehow involved (Aetna). Would be interesting to know! Thank you. I do have Aetna Plan G but have been told I have to have a drug plan to get Brinsupri and the Dr submits the PA to the drug plan?

@irenea8 I was finally approved two days ago after a lengthy time which included an appeal. So far no word yet from the specialty pharmacy that has been assigned to me. I am going to followup for you exactly where the insurance money is coming from i.e. Medicare, or my Medicare Supplemental which is Michigan Blue Cross Plan G or my Medicare Part which is Michigan BlueCross Prescription Blue PDP Premium.

My hope is that my copious amounts of sputum (I average 120cc plus or roughly 4 ounces a day) is cut down by blocking those dang neutrophil enzymes. I do not have MAC and never have but have grown various bacteria along my ten year journey. Quite frankly it a positive ray of hope for me. Lately, I have been very exhausted with all it takes to do air clearance.