Brinsupri follow-up

@scoop
I'm so excited for you and your improved symptoms!

@sdugan001 Have you ever been and is it possible for you to go to National Jewish Hospital in Denver, Colorado......or the Center @scoop has mentioned. I know a lot depends upon insurance, finances and time but it might be very beneficial for you if you can. Are you familiar with National Jewish Hospital? If you have time it might help to research it to understand why I am mentioning it and why I, myself, immediately took myself up there when I realized I needed their help vs the local pulmonologist who wasn't fully knowledgeable of all possible problems that come along with Bronchiectasis and what to have me start doing for myself to help myself.
We want for you to keep trying and finding your way to feeling better and getting the best help you can. We understand how you feel....this isn't easy and it is so much work.
Hope you have been having a better day of it today.
Barbara

@blm1007blm1007 Hi, this is actually something my pulmonologist has wanted me to do for quite some time. I even had an intro appointment over the phone with NJH a few months ago, but have not moved forward with it due to insurance/financial reasons. Ideally, going to NJH would be the goal. It is also difficult for me to find time to take off to go given my graduate school program. So I am sort of just stuck in this in between stage for now :/ I have a tentative appointment to get a chest CT tomorrow but it depends if it gets authorized in time/if I can even find a way home to make it.

@sdugan001 You are young I am 83 and I know how we think when we are young. Your pulmonologist is right and I am glad you do want to go NJH.
Think out of the box to find a way regarding finances, your graduate program and all that is needed to get to NJH. I wonder if NJH has a program that can help you since you are in the position you are in. They have many different types of donors, who knows ......there might be something there to help you. Just an idea.
This is your health and it is something that would be best to do now, as soon as possible per all you have told us. Things we often put off in the early years come back to bite us twice as hard later on. Another thought, I don't know how to do this and I know it is not something totally comfortable to do .....however.....is there any way you can establish a go fund me on the financial end.
Would you be comfortable talking to those in charge and figure out how to handle the time away and how to adjust once you return to finish up the graduate work program.
Feel free to ask as many questions here on Mayo. All of us will will understand and try to help you.
You can start threads with your questions other than this one regarding Brinsupri that you found your way to.
Hope you don't mind all I have said but I, we, want you to do what is best for yourself not only in the short run but also the long run.
Barbara

Check out
https://www.letsbecleartoday.com/ to find an NTM BE center near you. Yes NJH is the gold standard, but perhaps it would be easier for you to go to one of the new approved centers throughout the US.

Went to NJH for a week at end of August & Just started brinsupri 16 days ago. There is a place to apply for assistance with copay for brinsupri: The Assistance Fund on line or call 833-426-2085. I applied & am getting it for free.
I understand that it is a wait and see when it comes to exacerbations.

I’m on day 15 of starting Brinsupri. Yesterday I thought I might be improving and today I definitely see an improvement! Not coughing nearly as much and I had my first good nights sleep in a while. I was having quite a few excerbations and at the end of one when I started. Even the mucus from Mac has lessened. Had my regular tooth cleaning and dentist went over how to help prevent gingivitis. So we’ll see what happens from here on. Marilyn K

@marilynk Great! Curious what your dentist said about how to prevent gingivitis.

Taking as much care with our gums as we do our teeth. I have a rubber tipped appliance I use at the gum line as often as I can. Also the tiny (small) brush like that go between the teeth to rid any foods, as well as flossing as they all reach or touch the gums. Several different ‘tools’ that you find at the pharmacy. M

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