Brinsupri experience after 3+ months

@irenea8 The other day I wasn't sleeping well and dizzy at times.
Due to my past experience I felt it was that I had wrongly cut back on the amount of D I was taking and was therefore not taking enough Vitamin D. I went back to my regular routine of the amount and slept better and dizzy/vertigo spell stopped.
I found, for me, that when I am on certain types of medication it affects my D level and it goes lower.
I know you do the D but thought I would tell you of my experience and findings for myself.
Barbara

@irenea8 are you thinking to stop it? I’m almost at the six month mark and starting to see quality of life benefits.

@blm1007blm1007
True vertigo is not the same as dizzy. Severe vertigo is very frightening and awful to experience. I am taking plenty of D and even if it was a bit low it could not cause those extreme symptoms. I mostly suspect it was reaction to Brinsupri.

@scoop, Glad to hear that Brisupri works for you. When youy say that you start seeing quality of life benefits, could you elaborate a bit? I imagine it is due to lessen the mucus production?
I am also close to six months old. I don't know if it works for me because when I started I had shortness of breath and fast heart beats. Shortly after taking Brisdupri, the symptoms were gone, but not long after they came back. After seeing my pulmonologist, he said that I had a flare-up. 5 days of prednisone cleared everything. Now my pulmonologist thinks that my symptoms were related to elevated eosinophil. It is so hard to sort things out, everything murky and blended together.

Hope you are continuing doing well.

Ling

@sueinmn Sue, are you taking 10mg too?

I started taking Brinsupri 25mg on October 1, 2025. I have bronchiectasis with MAC. At the time, I was being treated for pneumonia/infection. I had been diagnosed with the pneumonia in June 2025, and it had never cleared. I was back to the ER in September and twice in November. I don't think the antibiotics that were prescribed were right - included a lot of Doxycycline, with Augmentin added in September. I can't tolerate Levaquin. In November, I was prescribed two rounds of Azithromycin and Augmentin. Although I felt extra sick and developed a bad rash from the Azithromycin, it helped. Early this month, I developed acute bronchitis and was prescribed prednisone 40 mg for 5 days, and am now on Augmentin for 14 days. My last CT was 1/8, and the infection has still not cleared in my lower left lobe.

During all of this, I continued taking the Brinsupri. I have developed a lot of skin problems. I feel like I have been living in a dehydrator machine. The worst of it started in my 3rd month of taking the medicine. My lips have been terribly chapped, and my skin is very dry. I have developed hyperkeratosis on the soles of my feet and palms of my hands. The soles of my feet and palms of my hands burn and itch constantly. I also developed two odd looking sores that didn't heal, one on each leg. My pre-cancers on my hands were treated in November 2025, and they already need to be treated again. Last week, the dermatologist froze the leg sores, prescribed a super-strength corticosteroid to use for 2 weeks on the soles of my feet and palms of my hands, and scheduled PDT blue light treatment for the top of my hands.

I have also lost a considerable amount of hair. I noticed that it was getting dry and brittle on the ends, and then it just started falling out. I see my hair stylist every month, and she confirmed that my hair is much thinner. I can't style it as usual, so am just pulling it back in a banana clip.

I don't think I've developed any dental issues, but am scheduled to see the dentist in February. I also have bloodwork scheduled in February to check liver enzymes.

The positive things noted while on Brinsupri: My sputum was thinner, I had fewer coughing attacks (except for the recent bronchitis episode), I was sleeping better and I have not had hemoptysis since mid-November.

I met with my pulmonologist this week on Wednesday. I have decided to stop the Brinsupri for now, hoping my skin and hair problems resolve. If I do resume use, it will be at the 10 mg dose. I am concerned about side effects from stopping the drug. Hopefully, those will be minimal.

I hope that most of you don't experience these difficult side effects, as they are supposed to be rare. Good luck to all!