Brinsupri experience after 3+ months

@Cathln I agree it is very depressing. The Brinsupri has been a big help in reducing the number and severity of exacerbations so I really cannot give it up. I am currently on 25 mg but think I will cut the pills in half and see if that slows the hair loss. I am having some skin issues as well but nothing very severe.

@maryjanechilds Please consult your pulmonologist or pharmacist before cutting the pills! There is a 10 mg dose that my pulmonologist uses exclusively. When I saw her Monday she said her patients do well at reducing cough and exacerbations with very few side effects, and she will be monitoring further progress via new CT scans at one year.

@sueinmn
Thank you Sue, I will check with my doctor.

@sueinmn Did your doctor mention why she’s not using the 25mg? I’ve been on 10 mg since last Sept , and currently being treated for my 2nd exacerbation . The UT Tyler Dr ( who was involved with the clinical trials ) said I could try the 25, but I’m nervous to bump it up .

It's hard to know what would happen anyway or is it the Brinsupri. Maybe the Brinsupri accelerates things. I suddenly have more acidic keratosis and larger ones. I haven't noticed hair loss, but for some time my eyelashes and eyebrows have been disappearing and I have hardly any leg hair -- before Brinsupri. I guess we would need to stop or go to a lower dose to see if that makes a difference. My dermatologist was confused with what info the company provides about the study and skin side effects and the medical line provided no more information than what we can find. I think they don't really know yet as far as some of the side effects.

When I thought I'd reached a stable point after 9+ months on Brinsupri, I am surprised to see even more improvement now that I'm approaching the 10 month mark.

I remembered hearing Dr. Daley from NJH mention during a webinar that he believed it could take up to a year to achieve the full benefit. I'm starting to think he was right.

I've been fortunate to have very few side effects. The only thing I've noticed may be an increase in actinic keratoses (AKs), which means more frequent derm visits. But better breathing, less phlegm, and feeling better overall versus extra skin checks? I'll take the skin checks.

I'm still cautiously optimistic, since we don't yet know the long term side effects of Brinsupri. But so far, the benefits continue to outweigh the downsides.

@cholash She said she is following the initial test results that showed equal effectiveness between doses at managing cough, mucus and exacerbations. And the lower dose has fewer, milder side effects. She said there was some evidence that the higher dose limited progression, but she is waiting for the longer, real world followup reports. At one year she plans to do new CT scans on her Brinsupri patients.

As to your continuing exacerbations, how does it compare to before the Brinsupri? The study results showed a decrease of 21%, so if this is fewer than you had before, by even one flare, the drug is performing as well as it did in the trials. She also stressed that there is a big difference between the limited study population and the people, often with more issues, taking it now.

Have your other symptoms improved? Have you been as diligent with airway clearance and other precautions since you started the med?

I've been on 10 mg. Brinsupri since Sept. '25 and have Bronchiectasis (with COPD and cough variant asthma). I have noticed improvement in reduced exacerbations of getting sick with heavy coughing and mucus since being on Brinsupri. But, I have shortness of breath and extreme fatigue - my energy level has sadly not increased. I have also noticed hair loss/thinning (especially at the crown) that I'm concerned about and have a noticeable increase of actinic keratoses (AKs) all over my arms and legs (I don't think it's from my past sun exposure), which I'm also concerned about. I see a dermatologist every 6 months, who is aware that I am taking Brinsupri. She has removed and biopsied some of these crusty things since I started taking Brinsupri and luckily non-cancerous (prior to that I did have 2 basal cells removed). But, I don't want these cuts all over my body because the AKs keep appearing. My blood pressure is slightly raised since I've been on Brinsupri, and some teeth/gum issues, which I'm not as worried about. I'm keeping a close eye on things and reporting my observations to my pulminologist, who doesn't have much to say about the side effects I'm experiencing.

@sueinmn thank you . My local pulmonologist says basically the same thing , as for having me on 10mg. Fast forward , I went to UT Tyler 2 1/2 months after starting Brinsupri , as I was questioning my local doctor’s knowledge with BE.
Tyler had me start sending in sputum samples( which I had never done ) , and also increased my nebulizing ( I had not been doing it daily ), and also how I breathed during the treatment. They also taught me airway clearance , which I had never done .
So all that to say , I'm more diligent now than I’ve ever been with daily clearance, but my exacerbations haven’t decreased .

@cholash If you are doing all of that with no improvement, you may be one about 1/3 of people not helped by Brinsupri. Only you can decide if you want to give 25mg a try.