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What's your experience wtih Brinsupr (brensocatib)?
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?
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@tolepainter yes I have had some hair loss but the improvement in how I feel outweighs any thought of stopping the drug.
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1 Reaction@smc17
AI search: Based on FDA-approved information and clinical trial data, caution is advised when using Brinsupri (brensocatib) in patients with low white blood cell counts or low neutrophils (neutropenia).
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1 Reaction@tolepainter
I also have experienced scalp itching and more hair in my brush
@irenea8 what can happen if you take it with a low white cell count? Mine fluctuates.
@susie2
I am no expert. I just did an AI search. Did another one based on your question:
Taking Brinsupri (brensocatib) with a low white blood cell (WBC) count is concerning because the medication works by inhibiting neutrophils, a type of WBC that fights infections. While the drug is designed to curb inflammatory overreaction, it may potentially worsen an already low WBC count or cause the immune system to become less effective, which poses a risk of serious, untreated infections.Key Dangers and Considerations:Serious Infections: While trials showed no significant increase in infections, the EMA advises caution in patients with an absolute neutrophil count (ANC) lower than 1,000/mm³ (moderate to severe neutropenia).Neutropenia/WBC Drop: Some patients have reported experiencing severe neutropenia (a low WBC count of 0.8) and infections, such as pneumonia, after starting the treatment.Infections of the Mouth: The medication is associated with gum (gingival) and dental problems, which may be exacerbated if the immune system is already compromised.Unstudied in Immunocompromised Patients: The safety of Brinsupri has not been formally established for patients who are already immunocompromised.It is highly recommended that you report any low WBC counts to your doctor immediately. If you have been prescribed this medication, it is important to follow the advice of your healthcare provider regarding regular blood tests to monitor your WBC levels, as advised in the prescribing information.
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3 ReactionsI also have scalp itching and noticed hair loss since I started Brinsupri. My cough has improved quite a bit, but the hair loss is troubling since my hair is thin. If the loss continues, staying on the drug will be a tough decision. I've been on it 3 months.
@jago
Thinning hair can often be treated, so it may be worth discussing with your dermatologist. Hopefully there’s a way to address it without having to choose between breathing better and your hair.
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1 Reaction@smc17 I was just talking to a pharmacist at Panther RX today and that topic did come up. I too am worried about keeping my immune system strong since I am on "watch and Wait" after being diagnosed with M.Abscessus. That said, inflammation is problem too. According to my Pulmonologist when I asked him if it would affect my immune system, he said: "I don't think so, but I do know it helps with BE inflammation, fatigue, and mucus production- for many. Fortunately, I was one of the many and my inflammation is a better, mucus production way down, and my fatigue is almost gone. I also have asthma and just started experimenting with Montelukast-which really helps my inflammation, but the 10 mg causes nausea. So trying a lower dose and at night now and may increase to 10 mg. Back to Panther RX pharmacist. She told me what I have heard before, the enzyme that is produced by the neutrophils AFTER they do their work, is the target. But this is how I think about it: It's a new drug and do they really know exactly what is going on? Could there be another mechanism not yet apparent? I don't know. Or maybe the neutrophils will morph and Brinsupri will not work after a few years? I've decided to trust the meds and my goal is to eliminate the inflammation and over time clear my lungs of impacted mucus that remains despite nebulizing 2/day with 7% saline, ACT, and exercise. If my WBC's were low, but was generating so much mucus, I would try the Brinsupri 25 mg and monitor neutrophils every 3 months or so.
@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.
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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.
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