Brinsupri experience after 3+ months

@11565lady hi there! Was on Brinsupri for a couple of months and then developed a burning feeling on my right forearm. I stopped the medication and it eventually went away so I was feeling great so I re-introduced the 25 mg and sadly the same exact thing happened. So I stopped it again and when I felt better, I cut the pill in half. I was doing great for about a week and wasso hopeful, but then the burning sensation in my forearm came back. Also, when I bend over I feel like a tingling in my right arm (only if I bend over.) So disappointed. I stopped it last night and will try to get myself all better and then reassess. Really appreciate everyone’s feedback here!!! Best of luck to all! I just turned 50 and have been at this since I was eight years old!

@scoop
If you are O.K with the questions.
Do I remember correctly?
Were you scheduled for a C Scan in August after having been on the Brinsupri for the year???
If so, how did it look, improvement etc. etc.???
Is your production of mucus at, and still at, a lower level than before the Brinsupri?

I"m having a real "bad" production of mucus morning. The mucus just keeps coming up. Feel well, thank goodness. Could be my needing longer or more nebulizing session(s). But it sure can be time consuming bringing it up and out..... nearly for the last hour and a half. It just feels like it is 'hanging' there.
Thanks for all you find time to post and help us.
Barbara

@blm1007blm1007
Pulmonary doesn’t see a need to repeat the scan as long as my sputum cultures remain negative and I continue to feel well. At this time, I don’t see a reason to subject myself to more radiation. If a new scan could potentially change my treatment, I’d consider having one. For example, if it might support cutting back on my 2x/day airway clearance, I’d be interested. If my phlegm production magically disappeared and there was reason to think some lung remodeling had occurred, I’d be curious to see whether a scan would show that and whether it might change what I need to do.

My sputum production has decreased, but it has not disappeared. Overall, I feel much better health-wise than I did before starting Brinsupri.

So frustrating for you to spend so long on airway clearance. That used to be me even though the advice was no longer than 15-20 minutes. Perhaps stop after 10-15 minutes and repeat an addition session, keeping that short too? All the time spent doing airway clearance was part of the calculus in deciding to start brinsupri or not. For me it was an easy decision.

@scoop
Oh, good for you Lucky you with that one in particular...."cultures remain negative and I continue to feel well." True, "no reason to subject to radiation."

Yes, it is the one thing I am thinking seriously about, starting the Brinsupri , due to the mucus and mucus plugs that I always have. I must have some deep "pockets" in those damaged lungs of mine with the cause of the nearly constant mucus and mucus plugs.
MAI still remains at a low load. As a matter of fact, I am waiting on the Tyler sputum results in that they kept it longer under 'watch" etc. because they couldn't get anything to fully grow. Going on nine weeks working with it at the lab. They did say Intercellular. All I can do it wait and then ask questions!
I know we don't know much about it, the Brinsupri, in terms of long term and long term usage and possible long term findings/outcomes.
However, again it is that thing called quality of life while living the now and at nearly 84....I think it is time to possibly "go for it." Hard decision with not being on any med's except the saline. Avoided med's all my life until the Bronchiectasis and infection.
Thanks for your response and detail.
Barbara

@blm1007blm1007 Hi, just read this hours later. If your mucus is coming up, why do you need extra airway clearance. I am probably not in as good of shape as you, and I certainly have more advanced BE. I am counting my vest and nebulizing treatments (2X) as airway clearance. When it starts coming up I do more of a hock than a huff, because huffing just isn't going to shift it. I have a hard time doing gravity based clearance techniques. I walk twice a day, and that starts things moving a while after I get home. I dread winter because of my lack of activity compared to spring and summer. Do you take mucinex? I'm quite certain that after being on Brinsupri for 2 months there's definitely less mucus (and less fatigue), but I am scared to forego the mucinex, because I don't want to ever start plugging up again. That's what got me in real trouble, skipping mucinex. I hate the dry feeling, and dry mouth. I had dental cavities from dry mouth, when I started on Mucinex a few years ago, and now, I even have a visible tooth cavity from dry mouth...never, ever had a visible cavity. I'm over-due 3 months on my dental checkup because of being so ill this spring/summer. Now I'm scrambling to get into the dentist anywhere, since my dentist couldn't see me until late Oct. Oh, and being on MAI drugs and getting so thin, I am supposed to eat many meals a day - pretty hard to do, with treatments, walking etc. Then I've been cleaning my teeth thoroughly after each of these small meals. One problem can cascade into many.

@ursala7 I'm interested in your introduction of Mucinex - I asked my doc if I should use that instead of the 7% saline in nebulizer, but haven't heard back. I was starting to cough up blood and she thinks it may be due to the saline... Did you pulmonologist prescribe it? Any interactions wtih the other drugs or hard on your liver? Just starting this "journey" 4mo ago and am defeated in the requirements to stay well and searching for alternatives to make life easier. I'm 65 with BE, asthma, and MAC.

@pgpunch Being new to this diagnosis (but not, as you said in another post, to the disease), it is normal to feel overwhelmed as you said here "Just starting this "journey" 4mo ago and am defeated in the requirements to stay well and searching for alternatives to make life easier. "

You could be me 8-9 years ago - over 65 with diagnoses of asthma, bronchiectasis, MAC and pseudomonas. So sick I couldn't walk a block without pausing, coughing, just a mess. And searching for answers, mostly finding scary stuff.

When I found Mayo Connect, it was my lifeline! Here I learned what sources to look to for my information, learned the importance of airway clearance (and 7% saline, which was less-common then) and most important how to live with these conditions.

Here and elsewhere, some people advocate for every kind of precaution you can imagine, and I knew that I could not live like that. I was lucky that my great primary and ID doc both said "This is a disease you will live with, but not die from. Take reasonable precautions, then go out and live your life."

I hung in with the antibiotics for almost 2 years, and was pretty miserable, but also started saline nebs with my airway clearance. That helped me turn the corner, and I have been MAC-free with stable CT scans for almost 7 years.

Then I became familiar with three experts, Dr Joe Falkinham (now retiring), Dr Jennifer Honda and recently Dr Shannon Kasperbauer - all of whom take a realistic approach to the precautions we NEED. Following their advice, I "picked my battles" - and did only what seemed necessary for me to stay healthy. Of course, eating healthy, getting enough rest and staying away from sick people, but here is my "must do" list:
1 - Airway clearance (only rarely with saline now unless I feel "something" coming on)
2 - Keep my asthma and allergies under control
3 - Water precautions - 135F water heater, 0.2 micron water filter at a separate kitchen tap, drink/use the filtered water or bottled spring water if not at home
4 - No hot tubs or indoor pools, but I swim outdoors in pools, lakes and the ocean
5 - Garden in wetted soil, leaving dumping mulch and digging soil to helpers, and mask if they are doing it
6 - Travel - mask in planes, buses and other indoor crowds
7 - Equipment sterilization - for me simpler is better - wash in Dawn & filtered water after every use. Boil in distilled water on the stove top weekly, air dry, store in a covered container. (Boil daily if ill)
8 - Get my doctor-recommended immunizations

That's it - then I just live life without fretting that there is danger everywhere.
I recommend these encouraging videos:

@pgpunch FYI: Sometimes coughing up blood, a tiny bit, can be that something we ate scratched our lining of our pharynx. That happened to me.
However you may have had an episode of hemoptysis which refers to coughing up blood from the lungs or respiratory tract. This can be common with patients that are coughing too strongly , incorrectly, and for other reasons.
Mucinex does not replace nebulizing the 7%.
What you should do if you do have hemoptysis is take a break from doing the saline and be sure you are seeing a pulmonologist who is on top of all the knowledge necessary to care for patients with Bronchiectasis.
Are you going to a Center of Excellence, most large University Medical Centers are creating special departments dedicated to Bronchiectasis. This type of Medical department is very important for us. If you do not know of the Centers of Excellence you can go to this thread here on Mayo: The Bronchiectasis Care Center Network --more centers added
Posted by becleartoday @becleartoday, Mar 12, 2025.
Barbara

@pgpunch Hi - yes I was told to take mucinex by my Primary during an exacerbation, then later, by all doctors, once they reviewed my chart and saw it on the med list. I take it twice a day, otherwise my thick mucus just won't budge during airway clearance. I don't think it interacts with the other meds. A lot of people on this site have used it for years. I have never used 7% saline - only 3%. Sometimes even that strength is irritating. You mention you've coughed blood - maybe try 3% for a while? If you try the Mucinex (or the generic is fine and cheaper), then it would be the combination of that and saline that helps you move the sputum out. Most people neb albuterol prior to the saline.
Yes, I understand your feeling of defeat. The discipline of self-care means giving up a lot of freedom. But when you think about it, most people 65 and up have to buckle down and pay attention to their particular health concerns.

@pge If anyone deserves some relief, it's you after 42 years.