Brinsupri follow-up

@cwal @crepass You asked about my experience with brinsupri, which I started about a week ago. So far I have not noticed any side effects. According to pulmonary early side effects (within the first week) can include abdominal pain and headache. Thickening of the skin and/or dental gum issues if they occur will happen months into treatment.

Daytime coughing jags have diminished and I'm sleeping better at night. Airway clearance continues to be the mainstay of treatment, which I continue 2x day. The secretions are lighter in color and the process is quicker than before I started Brinsupri*. I need to asterisk that last statement as recently I started a daily allergy pill which seems to have decreased the nasal drainage into my chest. I have an allergic profile along with asthma. Overall, my QoL has improved but honestly I cannot say that it's 100% related to Brinsupri. So, I'll split the difference and call it both! Hope others will weigh in with their experiences so far.

I have been on brinsupri one month. I’m hesitant to share so soon how much change I have noticed in my quality of life because they say 2-3 months before expected “changes”.
These are things I have experienced. Decreased mucus production, decreased fatigue, decreased coughing, decreased use of cough drops. I must share at the same time I started on brinsupri, I had also started on stiolto to to control my worsening cough this past year. but I am hopeful about feeling better and staying healthier. my regimen of 7% nacl nebs and act twice daily remains the same. and i have been mac free for almost 3 years.but still have BE.

@scoop I was wondering how long it took from the time your physician started the process of prescribing Brinsupri till you actually took the first dose? I am asking because my "general community based pulmonologist had me sign papers on September 17 and so far I have not heard a word. I did send a phone message to the office inquiring if they heard anything and so far radio silence. My pulmonologist has been very good to me but if I have to change to a Bronchiectasis center I will to help improve my QofL by getting more up to date treatment.

@dpaula It took 4 weeks. The holdup it seems was the volume of patients requesting Brinsupri and the prior authorization process. I suspect that now that they know the process subsequent requestors should move along more quickly. Have you sent a message through the portal? I remember sending a few to check status.

@scoop THANK YOU! I have sent voicemail to his assistant but I shall do thru their messaging system too. But the fact that it took you 4 weeks is telling me it is a bit of a process. All this will be worth it for me if my sputum amounts go down because I am producing quite the volume with negative cultures at this time.

My insurance, Medicare Advantage, denied my first application. I am currently waiting for the appeal process to play out. Anybody else in that boat?

I was at NJH last week and Dr Griffith sent the prescription to their pharmacy where I just signed my request. Otherwise I did not have to do anything else. It was 09/25 and actually they must have sent it to my insurance ( Medicare advantage ppo Aetna) the same day because it was approved 09/25. I was told someone will contact me in about 10 days and upon the delivery I must be present to sign the delivery. No one has contacted me yet. I am waiting and hoping it will help because unfortunately the ct I had at NJH showed progressing BE which depressed me- I do whatever I can and mucus does not move sitting there like glue. I was told to do AC 3-4 times a day. I started yesterday and my chest hurts, my throat is sore and I practically can do chores between. I hope I will find a way to stick to the routine and live life. May be soone is in the same situation and has advice- would be grateful.

I started Sept. 18 (25 mg). I think I am marginally better with slightly less coughing and mucous production.I have good days and bad days and the bad ones are just as bad as before (violent coughing), but perhaps less frequent. I seem to be coughing less at night as well. No side effects, and appetite seems to be improving a bit. Still doing airway clearance with nebulizer and vest twice a day. I am hopeful that in next 3/4 weeks I will see marked improvement but maybe that is being too optimistic., Lets continue this dialogue. PCIII

I was just notified by Optum RX that I was approved to receive Brinsupri. I'm guessing they mean by Medicare, but Optun RX don't have it and cannot process it. So, I guess I'll check with local pharmacies.

I'd like to hear from those of you that have it, what the average cost has been as I have heard outrageous amounts, and Medicare covering very little. Thank you!