Bronchiectasis - How ya feeling?

Hi @barbfit On another bronchiectasis support group, there were many 80+ year olds who had bronchiectasis since childhood. Their secret was frequent airway clearance. How often are you clearing your lungs? So while the disease itself won't get any better (non-reversible) you *might* feel better if you're clearing your airways more frequently. Easier said than done I know. It's quite common to cough up a lot of gunk even when there's not an exacerbation. Keeping an eye on the amount is good also so you can detect an exacerbation when there is one.

There's a book written by one of our group members @becleartoday , which is full of helpful advice for us sufferers. The name of the book is: "The BE CLEAR Method to Living with Bronchiectasis: A self-care guide to improving lung health and general well-being" available on amazon for kindle or paperback. It's well worth a read as it discusses fatigue, exercise, exacerbations etc.

Hi ScoopThank you for taking the time to respond. I will definitely check out her book! Is it on Amazon? As for my AC since I always have a lot of mucus, I don’t even need reminding of airway clearance at least twice a day, sometimes three and I absolutely hate it, and I will be doing it the rest of my life! (As y’all know) I use 10% solution, others use three or seven %.) I use a massager, Aerobika and physiotherapy techniques. I tried the vest and didn’t find it very helpful. I do find if I don’t move my body I feel worse. It’s hard sometimes but I force myself. Let me know about the book. 😊

Yes, available on Amazon.

Good to hear you are knowledgeable in this area. If we don't take our BE situations in our own hands, we will not get better. Has worked for me. I use 9% solution and, on another board, people were only using 7%. Glad to see you are on higher solution. -:)

I identify very very much with the description you give of yourself (except I’m only a year into this condition/disease paradigm) but I’m right there with you in your line of questioning too. I only this week came up with a question for my pulmonologist through my chart, “If I am eventually cleared of this MAC infection will my large quantity of sputum lighten up?” it took me a year to come up with that question. For a year I was assuming that once we, my Care team, and I decided to attack the MAC that that would be true. Sadly, the answer is, not necessarily. It’s sad how complicated this is.
Brensocatib is a new drug in the pipeline that I’m hoping will hurry to the marketplace or perhaps be approved for immediate compassionate use because it seems to hold lots of promise for treating Bx.
I was just feeling sad on this beautiful day at how little energy I have today. Feeling a little depressed and not “pushing through” as I usually do. And that’s why I turned to this wonderful resource to compare notes with others. So thank you for your post. It was exactly what I was looking for. complicity in our state of unknowing! Argh.

Are you saying that Brensocatnib is for Bronchiectasis? I know there is a medication already approved for lung cancer called Saracatnib but not approved for IPF/PF. Can u please provide a link for info on Brensocatnib? Thank -you.

Spider coincidentally, I just finished a year in a blind study on Bensocarb (Not knowing if I was on placebo or drug). After the year was up in November I have been on the actual drug. I can’t give a comment on whether it is helping or not. It’s hard to do that when you have to deal with infections and good days, bad days, and just the nature of waxing and waning. In this moment, I am coughing up a lot of sputum and was very short of breath yesterday, but the day before I was doing pretty good. So how do you know if something is working when there is no consistency and your symptoms?

@spider109 Here's an excerpt about future directions in the treatment of bronchiectasis (from 2022). It still has a bit to go, maybe 2025 if it passes all the hurtles.

"Treatments that target neutrophils may have an important role to play in the treatment of bronchiectasis. A recent phase 2 trial of brensocatib, an oral reversible inhibitor of dipeptidyl peptidase 1, showed promising results in patients with a history of two or more exacerbations in the year before trial enrollment. The time until the next exacerbation was longer with brensocatib than with placebo, with an acceptable side-effect profile. A phase 3 trial of brensocatib is currently under way. Other potential therapeutics being considered in bronchiectasis include novel inhibitors of dipeptidyl peptidase 1, antagonism of CXC chemokine receptor 2, and immunomodulatory drugs, including those that target eosinophils."

My pulmonologist, head of bronchiectasis/Mac clinic at UNC wondered if I might have eosinophilic asthma. Tests said no. So she put me on Breo, an inhaled steroid. I had resisted because of Mac years ago, but she says benefits outweigh risks. I’m on day 13 of 30 days. Don’t know if it helps or not because of my good days/bad days.

I use Symbicort, a combi of steroid and long-acting beta-agonist - it has been working for me for almost 2 years, and so far no infections🤞 My asthma is much better controlled, and it has helped my shortness of breath by reducing airway inflammation. The Breo (powder version) just caused me to choke.
Sue