What's your experience wtih Brinsupr (brensocatib)?

@smc17

I'll be honest - going on my 2nd month with no dramatic change. I still get severe coughing mornings & evenings, along with mucus output. So far no major side effects. Right now I have a head cold on top of this and that's not fun at all. I have decided to stay on it for 6 months and determine in July if I will continue. It is very expensive and if it was not for Medicare covering it and copay assistance, I know for certain I would not be on Brinsupri I hope you are able to find some relief.

@susie2
Hoping your gums and blood pressure return to baseline soon. If/when you begin Brinsupri 10mg please let us know how you're doing. You are not alone experiencing increased BP and issues with gums as they are both published possible side effects. My understanding is that they are reversible once you stop the higher dose. Wishing good health and good luck.

@smc17 I also did an AI search a few times on this. Not all AI chats are equal. Copilot is worse than chat gpt free and chat gpt free doesn't seem to be as in depth (powerful as Claude). Claude is no longer doing the 30 day free trial. I did go to Chat GPT free. Chat GPT free mentions ANC and the guidelines are anything over 1500 cells/uL is normal but anything less than 500 cells/uL is severe neutropenia. 500-1000 is moderate neutropenia, which do you fall in? The bottom line was that for even those with preexisting low neutrophil counts are not "automatically" excluded from taking Brinsupri. Something that you should talk to your pulmonologist about and get assurance that your WBC's would be closely monitored. In BE the neutrophilic enzymes cause damage to our airways along with increased inflammation (which also damages the tissue) and increased mucus production-not to mention fatigue. Also, to clarify what the pharmacist said, the Brinsupri works in the bone at neutrophil generation, and it blocks the DPP-1 that causes all the problems after the neutrophils do their work. Personally (and I'm not you), my biggest concern is keeping my airways clean and not have the sticky mucus that NTMs, fungus etc get stuck in and able to multiply. So, me testing positive for NTM and taking a risk on these meds is a chance I'm willing to take. But you need to decide what's right for you. I agree with the other post, in learning as much as possible about the drug and what it does and what are the risks. Dr Daly from NJH has a few videos online that cover Brinsupri you can watch, and maybe read the INSMED studies or summaries. Good luck with your decision.

@kathyjjb Hi. I may have missed your post earlier because after reading it I have a question.

How often do they do testing in general or for you to check the amount of neutrophils?

I think I know somewhat what ANC stands for but not sure. What is the full meaning of ANC?
Hope your weekend has been enjoyable so far.
Barbara

@blm1007blm1007
Thanks Barbara, yes having a nice quiet weekend with my son. I hope yours is well also.
ANC stands for Absolute Neutrophil Count. Prior to starting Brinsupri my Neutrophil count was 4.4 and 2 months after I started it was 4.14. But, I am skeptical if the Brinsupri caused that decrease. The year prior it was 5.84, so it was falling prior to starting Brinsupri. I'm not sure how often I should be getting blood tests? I'll ask at my next appointment in a month or 2.

@kathyjjb I take it you are going to see the doctor at NJH. Do you fly to Denver?
I will be interested to hear the answer about how often 'we' should be getting blood tests' and in particular to watch the Neutrophil count per NJH.

I just looked up my tests ordered by my primary care doctor last year about this time. My ANC, Neutrophils, for the last two years have been in the 4,000 range.
Thanks for bringing up that discussion about ANC. I see him, PCD, this week and will see if we can do the tests he did last year so I can get this years count.
Barbara

@smc17

I'll be honest - going on my 2nd month with no dramatic change. I still get severe coughing mornings & evenings, along with mucus output. So far no major side effects. Right now I have a head cold on top of this and that's not fun at all. I have decided to stay on it for 6 months and determine in July if I will continue. It is very expensive and if it was not for Medicare covering it and copay assistance, I know for certain I would not be on Brinsupri I hope you are able to find some relief.

@tolepainter I'm right there with you. Started early April and nothing yet except that I did get a pretty sever URI a couple of weeks after starting. Coincidence?? I will keep with it for 6-9 months but don't see the point if no symptom improvement at that time.

@scoop my pulmonologist has recommended that I not even restart Brinsupri at 10 mg. Given the slowness of my bronchiectasis progression, my age (85), severity of side effects, and sensitivity to medication. He said there are some people who just shouldn’t be on it, so I won’t restart. I hope I’m not typical, and that few others experience what I did.