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.

Had a 6-month cleaning yesterday. No change in gum health, thank goodness. On Brinsupri for 2 months. Dentist and hygienist and I talked about Brinsupri and impact on gums. They said everyone over 50 has some gum inflammation. When it gets bad it turns into gingivitis with pockets, etc. When caught early it can be reversed with proper care. Since Brinsupri has the potential to increase gum inflammation, they gave me samples of parodontax (toothpaste for anti-gingivitis and cavity prevention), along with an in-office fluoride treatment and instructions on how to use a gum massager (the thing with the rubber tip). I always wondered what those were for!
https://www.parodontax.com

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Eight weeks on brinsupri.
Yesterday my pft showed improvement- significant in the inhale part, a bit in the exhale. Apparently the exhale obstruction is caused by the Bronchiectasis. My energy and stamina increased early on and continue to be good. Also, no hemoptysis!
They did take blood samples to monitor kidney and liver levels - the doctor said this is because there is still a lot they don’t know about the drug.

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Profile picture for cwal @cwal

Well, I've been taking Brinsupri for one month now. So far, no side effects. I did have some stomach upset for a couple of weeks but I also was having lower GI upset due to some food I ate, so that is kind of perplexing to sort out. Regardless, whatever that episode was is out of the picture now.
On the positive side
1. I consistently feel good (although I did not feel bad, there were days when I just did not feel as well as others)
2. Less sputum, less "blobs" which equals less hard work to get that stuff out
3. Exercise tolerance seems even better. I already did a bike spin class 3 days a week and did well, but the exertion
of doing it seems to have improved even more. I'm curious to see what my PFT shows next time I see
my doctor.
4. Between my insurance and being accepted into "The Assistance Fund" I am paying zero for Brinspri.
Hopefully, all these these positives will not change and I do not develop any side effects later on or end up losing the help with paying for this costly drug because at this point, I consider this drug the best thing to happen for this community so far.

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@cwal Is the Assistance Fund based on tax forms and income.

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Profile picture for picartist @picartist

@cwal Is the Assistance Fund based on tax forms and income.

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@picartist This might help to answer some of your questions. To qualify I believe household income cannot exceed $150,000/year.
https://connect.mayoclinic.org/discussion/open-enrollment-for-2026-for-brinsupri-commercial-and-medicare-info/

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Profile picture for picartist @picartist

@cwal Is the Assistance Fund based on tax forms and income.

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@picartist
You do have to tell them your annual income but they don't ask for any copies of taxes, etc. Just a figure to fill in the appropriate blank.

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Profile picture for cwal @cwal

@picartist
You do have to tell them your annual income but they don't ask for any copies of taxes, etc. Just a figure to fill in the appropriate blank.

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I went to Gemini, Google's A.I. and received the following to my financial question. I am sharing Gemini response below.

"Here is the breakdown of your maximum potential out-of-pocket costs with your UnitedHealthcare AARP Part D plan for 2025:
List Price: Brinsupri has an annual list price of approximately $88,000.
Initial Costs: Depending on your specific plan's deductible and coinsurance rate (which could be around 31% for a specialty tier drug), you would pay a portion of the initial cost. The calculation of 31% of $88,000 is indeed around $27,280, but this amount is limited by the annual cap.
The Out-of-Pocket Cap: The Inflation Reduction Act eliminated the 5% coinsurance requirement in the catastrophic coverage phase and placed a hard cap on annual out-of-pocket spending.
Your Maximum Annual Cost: In 2025, the maximum amount you will pay out of pocket for all your covered Part D prescription drugs is $2,000. Once you have paid this amount, your plan covers the full cost of the medication for the rest of the year.
Therefore, your total annual cost for Brinsupri, without any additional financial aid programs, would be a maximum of $2,000, assuming you have no other prescription costs that count towards this limit. The cap for 2026 will be $2,100.
You can also explore patient support programs offered by Insmed, the manufacturer, which may help with initial costs or deductibles. You can find more information about your specific plan's benefits, prior authorization requirements, and network specialty pharmacies by contacting UnitedHealthcare directly via their AARP Medicare Plans website or by calling the number on your member ID card. "

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Profile picture for scoop @scoop

@brettdf My understanding is that Brinsupri is distributed through a specialty pharmacy, who will contact you directly, so hang tight. Depending on income, you might have some cost sharing but it will not exceed your out-of-pocket maximum for this calendar year assuming medicare. Private insurance might be a whole different matter in which there might be a high Tier-whatever co-pay. Each case is individual and based in what insurance and income level.

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@scoop
My pulmonologist reported 20% decrease in symptoms after 1 year with Brinsupri.
She also said there was another drug in clinical trials.

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For a drug to count toward the out-of-pocket cap, it must be a covered drug on your plan's formulary. If your doctor can get an exception from the plan for a non-formulary drug, and that exception is approved, then your costs for that drug will count toward the cap.

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Profile picture for pfists @pfists

I just wanted to give a quick update on Brinsupri. I started one month ago at 10 mg. My breathing has been trending for the better ever since. I actually wake up with my oxygen in the 94 range. Before Brinsupri I would get up to 94 after neblizing and airway clearance.
I haven't noticed any side effects either. I saw the dentist last week and she gave me a kit of povolone iodine that you swab on your teeth and gums once a month to prevent cavities and gingivitis. I also found some acticles about using xylitol for the same effects on you teeth and gums. You buy a bag of xylitol crystals and hold and swish a half teaspoon in your mouth for a minute twice a day. I have been using both of these methods and I have to say niw in the morning my teeth do not have plaque on them in the morning like they use to. I was quite amazed with how much difference it made.

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@pfists
Do you mix the crystals in water? Assume so but how much water per 1/2 tsp?

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No, I just put half teaspoon in my mouth and let it disolve hold and swish for a minute then spit out.

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