Brinsupri follow-up

@pacathy are you on the new drug, Jascayd? I’ve been prescribed that but haven’t started it yet. I’m looking for any results from anyone else who may be on it!

@kaydee26 I’m not. As I mentioned in the post, I don’t have IPF. I’d just done a very quick search in an effort to assist @mswiggles9

Sue’s suggestion to check the more general lung forum is a good one. Good luck to you!

I took a quick look at that forum and found this oldish thread on meds for fibrosis that might interest you. Suggestion-It might be helpful to start new thread in group asking about it.
https://connect.mayoclinic.org/discussion/pulmonary-fibrosis-meds/

@pacathy
Ok. Thank you!

@blm1007blm1007
I’m 6 months in, and am curious if others on brinsupri are having a similar phenomenon. Have had 3 different URIs that resembled the start of exacerbations in pre-brinsupri times. No fever on this last one). The headache was something new, the increased mucus and coughing was the same. Recovering without an exacerbation is also new. extreme dry coughing at night at the end of 2 weeks of uri is also new. but it all could just be symptoms of this particular virus. glad to say that last night noticed a distinct improvement. was in touch with pcp through this time. ,due to bp changes. That remains to be a watchful waiting.

@crepass Yes...a bit of watchful waiting in many types of incidences and events with having a lung disease and BE in particular.
Hope all you are experiencing does subside/go away and help you in this journey and with the Brinsupri.
I am not taking the Brinsupri at this time.
Barbara

Has anyone noticed a reduction in CRP after taking Brinsupri? My CRP levels have been quite high since last year and curious if Brinsupri will help. I just started talking this Brinsupri this week. I'm also hoping it will help my chronic cough.

I don't know if anyone can comment on this or not, but I am not taking Brinsupri because when I went to pick it up at my pharmacy the cost was $7,600!! My insurance paid $300. I have a new insurance but I can't see them paying that much. Any suggestions. It is worth it? I have bronchiectasis and he chronic cough is debilitating. I usually have an exacerbation every 2-3 mo. I take Azrithromycin 3 days a w
eek. Nebulize at least twice a day on 3% saline.

@vickied contact the inlightin program at insmed to explore payment assistance

@vickied Hi Vickie, I think your insurance might pay for it but there's insurance protocol for Brinsupri. My experience: A few months ago, I looked up what my Brinsupri cost would be on my Humana Medicare Advantage plan and it was the same ($7600/mo.). When I saw my Pulmonologist last month, he suggested that I try Brinsupri, I told him my insurance would not cover. His response was that it will BUT there is certain procedure, and it requires an "enrollment for Brinsupri". If you call Insmed they can help you through the enrollment process. It doesn't take long and they can do it over the phone. Low and behold, my insurance approved payment. My Dr. initiated the enrollment, but I think you can initiate yourself. Insmed works with PantherRX-not your local pharmacy. There is an annual copay of $2100 BUT, I did not have to pay that as it was paid by "The Alliance Fund" which Insmed set up for me. I never asked that the initial $1600 be paid for, Insmed suggested. It was SO EASY. I don't have INsmed number but you can google or call PantherRX at 888 299-3950. Panther RX ideals explicitly with Insmed and they know all about side effects, studies, etc. On another note, I had a chronic debilitating cough and going from 7% to 3% nebulizing reduced my cough dramatically-I still cough but it's no longer debilitating. If you don't have an NTM, you may want to discuss with Dr. reducing your nebulizing?

@vickied This.year my Part D plan under Medicare is paying. I had to pay $1800 + other meds in January and that took care of the $2100 yearly cap. Im now in the catastropic level. Good luck.