Brinsupri follow-up
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?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@irenea8 I don't think so but I am not an expert. One calendar year is different than the next.
I’ve been on Brinsupri for about 2.5 weeks. I started it on Sept. 25th. In my second week I am getting small patches of dry skin on my legs and on one dry patch the skin is peeling away. There are also very small hard bumps coming on my legs also. Is anyone else having any skin issues?
I have been taking brinsupri for 9 days already. What I noticed is my blood pressure in the morning is up a little. Normally i am low blood pressure person( 110/85) now it’s over 120 so I believe the med causes it.
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1 Reaction@lindabreathless I'm experiencing dry skin which seems to go with the season. Pulmonary discussed with me that if skin issues arise it's usually months into treatment. Nonetheless you might want to tell your doctor. I've read that hyperplasia of the skin can occur, which is thickening of the skin. Hard bumps sound like something different but it's good that you are paying attention to them as it might be related.
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2 ReactionsHas anyone experienced respiratory infections, additional wheezing, and/or nausea and shakiness upon taking Brinsupri? I started the 10mg dose on October 2nd, and I find that I get super nauseous after taking it, even when I take it with food. I also currently have one of the worst lung infections that I have had in a long time, pretty much aligning from when I started Brinsupri (it does not mean it is related but it makes me suspicious). I was put on moxifloxacin for a week (I took my last one today), and my sputum production is just as bad as before, and my wheezing is much worse.
I have also been getting incessant nosebleeds (I have never had a nosebleed before) but that may also be related to a nasal polyp I have that has gone unaddressed but thought it was worth mentioning. My doctor does not think my infection is related to Brinsupri either but I just do not know. I have been called in Ceftin and am going to start that antibiotic if my symptoms are just as bad tomorrow. I have been following my bronchiectasis regimen as well, which is using my percussion vest up to 3x a day while nebulizing (either albuterol/ipratropium or 7% NaCl solution), I typically use the NaCl solution because I feel like it works better for me for clearance. I also practice the “huff cough” breathing technique daily.
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1 ReactionWelcome to Connect, a very helpful group. It sounds like you're having a pretty tough time. Have you sent in sputum culture? That might give useful info to guide antibiotics. Does your doc know about the nose bleeds? I'd be sure to tell him.
@scoop25 will likely comment and is taking it. Thankfully, I don't need it at this point. Good luck to you.
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1 Reaction@sdugan001
Welcome to Connect, a very helpful group. It sounds like you're having a pretty tough time. Have you sent in sputum culture? That might give useful info to guide antibiotics. Does your doc know about the nose bleeds? I'd be sure to tell him.
@scoop will likely comment and is taking it.
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1 Reaction@sdugan001 What a bummer you are experiencing these symptoms. Although Brinsupri has not caused any issues in me so far, stomach issues and/or headache can occur when you first start it according to my doctor. That said, moxifloxacin alone can cause stomach discomfort, as can any antibiotic. I agree with @pacathy that a sputum culture is critical. Personally, I would not start another antibiotic until I dropped off a sputum sample for culture. I hope you feel better soon!
FYI – so far my experience with Brinsupri has been positive. I’m entering my 4th week and my previous random hacking cough jags are now rare, with mucus lighter in color and less of it, and clearance time seems quicker than before starting Brinsupri. I've just now come from a dental appointment (a restoration, which was at least 2 hours in a supine position) and did not cough once!
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12 Reactions@scoop My situation is a little tricky in that my pulmonologist is in Indianapolis, but I am in Chicago for pharmacy school. Therefore, it is not as easy for me to get a sputum culture done but I usually always have “emergency” antibiotics on hand in case of infection and I take azithromycin 3x a week for prevention purposes. I do know that antibiotics can cause an upset stomach, and try to take all the necessary precautions.
I am feeling like giving up and very discouraged as my condition only worsens and I am only 23. I fear what the rest of my life will look like. It is nice to hear about your positive experience and makes me a little more hopeful. Thank you and @pacathy for getting back to me. It is nice to talk to others dealing with this, I have felt so alone.
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2 Reactions@sdugan001 Thanks for explaining your circumstances. How difficult being in school, especially, pharmacy school, feeling crappy and with a chronic illness. Would it be possible to find local care so that someone could look and listen to you? Virtual care for bronchiectasis, especially during an exacerbation does not cut it. You are too young to be feeling so poorly.
There are 33 Bronchiectasis/NTM centers around the US, and there's one in Chicago, which is at Northwestern. Here's the info:
Northwestern Medicine
676 N Saint Clair St
Arkes Pavillion
Chicago, IL 60611
Phone: (312) 695-1800
Visit Website
Northwestern Medicine provides experienced, multidisciplinary care for bronchiectasis involving specialists from pulmonology, infectious diseases, allergy-immunology, rheumatology, and surgical specialties including otolaryngology and thoracic surgery / lung transplant. We oversee active research programs including clinical trials and translational research. Respiratory therapists who provide treatments such as nebulized medications and inhaled antibiotics are integrated into our care. Genetic testing is available when indicated.
Center Director(s)
Marc Sala, MD
Provider(s)
Manu Jain, MD
Michelle Prickett, MD
Michael Angarone, DO
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5 Reactions