Brinsupri (aka Brensocatib)

Posted by scoop @scoop, Aug 12 10:55am

FDA approved Brensocatib today. Hooray for us. Let’s hope we have access to it as soon as possible and it gives us some measure of relief. Thank you to all the scientists and doctors and patients!
https://www.multivu.com/insmed/9347351-en-fda-approves-brinsupri-brensocatib

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My dentists are clueless and I'm already fighting gingivitis. I am so very very worried about my teeth but have severe NCFB. Had a lobectomy even. Going in two weeks with this med and the company can't give me any info on how many had thos side affect and how long it took to show up. Have you seen anything else?

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Profile picture for kelley5454 @kelley5454

My dentists are clueless and I'm already fighting gingivitis. I am so very very worried about my teeth but have severe NCFB. Had a lobectomy even. Going in two weeks with this med and the company can't give me any info on how many had thos side affect and how long it took to show up. Have you seen anything else?

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@kelley5454 Pulmonary told me that any skin or dental side effects, if they were to show up, appear months into treatment. Keep brushing and flossing and thinking positive thoughts!

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Profile picture for kelley5454 @kelley5454

My dentists are clueless and I'm already fighting gingivitis. I am so very very worried about my teeth but have severe NCFB. Had a lobectomy even. Going in two weeks with this med and the company can't give me any info on how many had thos side affect and how long it took to show up. Have you seen anything else?

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@kelley5454
I was able to access the NEJM info on the phase 2 study and Ann clipping the info about dental that might help you. I can't access the more recent on Phase 3 without paying.

From Chalmers, NEJM, 2022.
""All the patients, excluding those who were edentulous, underwent dental assessment at baseline and at weeks 8 and 24."

Further in article, this:
"Across the trial groups, the numbers of patients with dental sites that had an increase of at least 2 mm in the pocket depth and an absolute depth of at least 5 mm (the threshold of concern in periodontal disease18) were evenly distributed, which suggests that there was no difference among the groups in the progression of periodontal disease. "

I am not eligible and haven't followed it closely, but as I read thru looking for you'd info, it sounds like like an exciting development. This is a about from Chest Physician “The most shocking thing from the study was the impact it had on FEV1,” said Charles L. Daley, MD, FCCP, Chief of Mycobacterial and Respiratory Infections at National Jewish Health and ASPEN site investigator. “The decline in FEV1 slowed significantly. You can tell someone that if you go on this drug, there is a good chance your pulmonary function is going to remain better than if you don’t."

. Having them check at 8 weeks and 4 months might be a place to start. It would be better if you could get access to NEJM's article on last phase for the data on the larger group.
Good luck!

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Profile picture for pfists @pfists

Hi
I kinda new on here. But I just received brinsupri today in the mail. I did ask my pulminologist if it was right for me and he agreed. I'm a little confused though because I didn't ask him anything about the dosage. I guess I assumed I would be getting the 25 mg dosage. But when I opened the box it was the 10 mg size. I will call his office and make sure this is what he requested.

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@pfists I'm curious. Did he leave it at 10? Are you doing ok on it.

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Is there anyone on the forum that lives in Iowa, received Brinsupri and is on Medicare? If so I would love to hear which plan D allowed you to get it through the exception process.

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Profile picture for kelley5454 @kelley5454

My dentists are clueless and I'm already fighting gingivitis. I am so very very worried about my teeth but have severe NCFB. Had a lobectomy even. Going in two weeks with this med and the company can't give me any info on how many had thos side affect and how long it took to show up. Have you seen anything else?

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I heard a researcher explain the it is people with a genetic defect called Papillon–Lefèvre syndrome (PLS), that have problems with skin & gums already who are those affected by brinsupri. As long as you print out the information about brinsupri for your dentist & have regular dental and dermatology check ups, you should be fine.

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Profile picture for robot @robot

I heard a researcher explain the it is people with a genetic defect called Papillon–Lefèvre syndrome (PLS), that have problems with skin & gums already who are those affected by brinsupri. As long as you print out the information about brinsupri for your dentist & have regular dental and dermatology check ups, you should be fine.

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@robot thanks for pointing that out. Pulmonary told me that this is a very rare autosomal disorder and usually detected very early in life when a baby’s first teeth erupt. I inquired because Brinsupri seems to have had devastating impact on those suffering with this syndrome.

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Profile picture for lindabreathless @lindabreathless

@irenea8
I was approved for Brinsupri from my Medicare prescription plan; Cigna.
I hope this helps.

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@lindabreathless
Irene, ironically I just received notice that Cigna is not offering a prescription plan any longer after Jan. 1st. I understand that they merged with another company and will be called HealthSpring, but they are not available in my area of Florida. There number is 855-401-9625 if you want to check your area for them. I’m working on finding a new plan.
Best of luck…

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Part D - I've looked at the Health Spring (new Cigna) and Wellcare formularies and Brensocatib is not in the formulary. On the Medicare enrollment page the medication is not available to price. So, I don't think it will show up in any plan's formulary.

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Profile picture for spider109 @spider109

I’ve been on Brinsupri for a month. About a week ago I started having what my Pulmonologist has said is an exacerbation. Now I had bloodwork, sputum, & chest x-ray done within the week and they’ve all but ruled out any infection. I don’t think it has anything to do with the Brinsupri, but I’ve had exacerbations before but this time I had the usual symptoms plus other ones I’ve never had during an exacerbation. Fever (1 day only) vomiting, & body aches. The xtra symptoms were only 1 day also. I was put on Levaquin and Prednisone taper 9/28, still having hard time coughing up mucus though. I attribute some of that to my other lung disease Pulmonary Fibrosis, which doesn’t allow me to fully expand my lungs to get a lot of air behind the mucus to help cough out. In the past 2 years I looked back in my records and seem to have exacerbations every spring & fall, which leads me to believe it is environmental triggers. Although I must add I always wonder what and why. Make sense? I’m very glad some and seems like most are having good success so far, and hopefully more of us will too. In the meantime I will stay the course and do what the Dr.s tell me. And I’ll be curious to see how it goes after my exacerbation passes.🤞. God bless us all.

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@spider109 I read this a few days ago, but am not on it and have nothing helpful to add. I have thought of you and wondered how you are doing with this current exacerbation. Are you still thinking it's your seasonal flare or do you think it's related to drug?

With your seasonal pattern, it\ would certainly make one wonder what the trigger for exacerbations is. Have you had allergy testing?

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