Treatment Options - Asthma and Bronchiectasis

@narelled23 My concerns were the same as yours, but my pulmonologist, who is an expert in Bronchiectasis and in treating asthma and bronchiectasis together, convinced me that the risk of not treating the asthma was greater than the risk of infection from steroid use. She was pretty blunt in saying uncontrolled asthma can kill me, but it is unlikely that Bronchiectasis will, and if that worsens we will have time to deal with it.

Here is another thing she pointed out - before Symbicort, I was getting asthma flares that required a course of steroids about 4 times per year. Those four bursts of prednisone to the whole system are far more risky than the very small daily dose to the lungs. And repeated use of systemic prednisone is more risky to bone health than the inhaled version.

So what is my experience after almost 4 years? ONE exacerbation that required steroids, and that was after a bout of Covid. NO lung infections, and still NTM/Pseudomonas free as of latest sputum count. Improved lung function due to less inflammation and less shortness of breath. And the "tight band" around my chest only happens with strenuous exertion, and can be managed with another shot of Symbicort.

Now, I couldn't find a study of risks/benefits for Asthma/Bronchiectasis, but I did find one for Asthma/COPD (they have similar risks to us for pneumonia and other lung infections.) If you want to take a "deep dive" into a research study, you can read it.
https://www.sciencedirect.com/science/article/pii/S0954611120304182
The tables are useful in showing the risks of infection and osteoporosis with various medications, showing low-dose Symbicort to be the least risky. (Remember about 40% of COPD patients continue to smoke, which also affect the risks.) My rheumatologist has ordered a Dexa scan with a trabecular bone score as a precaution.

@narelled23 Like you I have taken myself off Symbicort from time to time thinking the issues were solely from bronchiectasis. Those trials never ended well, sadly. Given my allergic profile verified by skin testing, high eosinophils, and symptoms over time I have come to accept my asthma/bronchiectasis diagnosis.

Have you considered Brinsupri? While I've been on it less than 2 months, I believe it has helped with inflammation as there is less mucus and coughing. I still need to do airway clearance. It does not replace the steroid inhaler for now but maybe over time the steroid dose may able to be reduced. Time will tell.

@scoop, I am also now being evaluated for high eosinophils (in bloodwork) and possibly either eosinophilic asthma or eosinophilic bronchiectasis. "Waiting and watching" (closely) since I'm now off either Arikayce or placebo (in a study) so we will see if the study inhalant irritated the lungs, caused wheezing, and drove up eosinophils. But more observation is needed to see if all this calms down. I am also on a Breo Ellipta daily to control these symptoms.
I had thought Brinsupri was only effective for neutrophilic bronchiectasis (most common), not eosinophilic bronchiectasis (less common). What went into your decision to try it, and how do you understand its positive effect?

@sueinmn
Thank you so much for that, Sue. It sounds like you have a very good team of experts behind you...something I will attempt to address myself. I need someone to spell out the whole story to me so that I can make an informed choice...not just prescribe something to accommodate my concern about eg steroids, and then be very offended if I question the drug after research. He actually said that I should be reassured because Formoterol was available commercially! However he has, on the whole, been patient and very accessible, but as a general practitioner of the older variety, he may not have enough expertise and doesn't like to be challenged.

However, the specialists for years have been indicating that my excess mucus and other symptoms seem to be coming from other than my mild bronchiectasis and wanted me to take eg Symbicort. When I didn't notice any difference in taking it, I would inevitably drop it. However, in those days I wasn't suffering any obvious Asthma symptoms or so much sob...so maybe the Symbicort can help that at least...and prevent further unnecessary airway damage.

Below I will attempt to paste some info I emailed my Dr some months ago, and which we haven't really addressed, about how an ongoing flareup can cause airway remodeling and permanent damage.

"How a flare-up can become ongoing:
Persistent Inflammation:
Triggers, like allergens, cause the airways to become inflamed, swell, and produce excess mucus.
Chronic Inflammation:
Repeated exposure to these triggers can turn the inflammation into a persistent, chronic condition, leading to ongoing damage.
Airway Remodeling:
Over time, chronic inflammation can cause structural changes in the airways, such as thickening of the airway walls and enlargement of mucous glands, further narrowing the airways."

Another question, if I may, for those of us nebbing hypertonic saline preceded by salbutamol, when you are taking the Symbicort twice a day do you still use salbutamol before nebbing?

@narelled23 I can't answer for others, but even before Symbicort, I substituted my levalbuterol inhaler ofr the airway relaxing neb. It works fine for me unless I am in a serious exacerbation, and it saves time.
When I do have an exacerbation, I usually neb budesonide, wait 15 minutes, then neb saline.

@sueinmn

Sorry Sue, you substituted for which one?
Do you know if ok to use both Symbicort and Salbutamol?

@scoop
Just lost a lengthy reply to you...sorry...on phone.

Back on Symbicort which seems to be helping my sob. Was so concerned that the sob was my new normal! Making an appointment with Asthma Foundation here to get expert input and am hoping to get back more quality of life.
Haven't considered Brinsupri at this point.

Wishing you great success with it. Fingers crossed.

@narelled23 That is a question for your pulmonologist (not PCP) - mine actively discourages me from using levalbuterol (another SABA like salbutamol) unless I am in a flare. Yours may have a different opinion.
My doc's rationale is that the LABA in Symbicort should be effective to keep airways open because it has a much longer effective time, and if it fails to work we need to talk. When I was having issues during allergy season, she rewrote my prescription to allow up to two extra doses per day as needed. This works for me.
(Oops, jargon again! LABA long-acting beta agonist, SABA short-acting beta agonist. This is the drug that relaxes the smooth muscles in the airway)

@lvnl There's eosinophilic asthma and then there's allergic asthma. I have allergic asthma. My IgE (immunoglobulin E) is elevated. Before allergy shots it was 1900 and after 2.5 years on allergy shots it's 600, which is still elevated but much better (normal range being under 100). I erroneously stated that my eosinophils were elevated when I meant IgE (sorry about that).

If someone has eosinophilic asthma, the eosinophils in their blood will be elevated but not necessarily their IgE. Eosinophilic asthma is usually triggered by non-allergic things such as infection, whereas allergic asthma is triggered by allergens (dust, molds in my case). I take a daily Allegra to manage my allergies.

In bronchiectasis we have elevated neutrophils which cause inflammation creating excess mucus. In this way, it's expected (hoped) that brinsupri will help. Brinsupri does not work on the allergic pathway. My allergies (elevated IgE) or in you elevated eosinophils will not be helped by brinsupri alone.