Pulmonologist wants me to use this for declining lung function. It doesn’t appear to be something I want added to my antibiotics for MAC
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Hello, I've been on Trelegy for 5+ years. I haven't been on constant antibiotics but take them 8-9 times/year. I didn't notice any affects from taking both drugs simultaneously. For the initial year I didn't notice any benefit from the drug but then learned that I wan't properly breathing in the drug. Since focusing on drug administration, the effect is amazing. Instead of my airways closing after 5-6 hours, they remain open and my O2 levels remain more stable. Love my Trelegy.
If you have cavitation, stay away from steroids. They can cause a fungal infection that is even worse than mac.
Thanks Rick, those were my thoughts as well.
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Renee & Rick (@rstel7272) – Yes, inhaled steroids are a risk if you have MAC, but there are some other choices.
If you have declining lung function, and part of the problem is asthma or COPD, there are inhalers that will help your lung function in the way @tumanic described, but without the steroid included in Trelegy (which may complicate antibiotic treatment.)
They are called LABA, Long Acting Beta Agonists and LAMA, long Acting Muscarinic Agonists. These help open the airways for 12-24 hours with a single dose. Anoro is one such medication, but I think there are a few others.
These are different SABA, Short Acting Beta Agonists like from albuterol and levalbuterol, which are meant to open the airways temporarily and may need to be repeated many times a day.
The long-acting treatments were developed for COPD, but are becoming standards of care for many other lung conditions because a single dose is effective all day (better compliance, less burden on the patient) side effects are less than either nebulized or inhaled SABA's, and research is showing a lessening of lung infections.
What did it mean for me?
I was able to completely stop levalbuterol nebs unless I have an exacerbation. And with my lungs always "open" I don't have to time airway clearance to coordinate with taking meds, I do it when convenient. Wonderful time & labor savings!
My breathing is better, and after a few weeks (to get enough in my body) my chronic chest heaviness/chest pain was gone. I have only needed my rescue inhaler a handful of times this year!
Finally, my exacerbations are down to one in the past 18 months, as opposed to 2-3 per year before.
So – it is worth further discussion with your doc to find one of the many inhalers now available that can work for you!
After e.5 years on symbicort, I switched to Spiriva respimat one year ago. it saved my life
I was on Trelegy, which contains a corticosteroid. That dials down your immune system.
So I got MAC. I do nebulizing and occasionally use Combivent.
@rstel7272 did you find that Spiriva dried up your mucus making it more difficult to expel?
Thanks Sue, I’m going to ask my Dr about these other options
I am on Stilio respimat now after being on Trelegy for a couple years. I really liked Trelegy but requested switch due to steroids with MAC. However, I don’t produce sputum ( or very rarely) so your comment, Scoop, has me curious. What was your experience?
In keeping with this discussion, has anyone asked the Denver or Mayo doctors about the use of anticholinergics (sp?) with respect to bronchiectasis and making mucus harder to expel? Trelegy and spiriva (I think) both have some anticholinergic effect. Logically it has always seemed to me that drying up the mucus was not a good idea but I have no clue about this. I have an autoimmune disease and have to be on steroids (low dose). I also have asthma. Some of us need steroids for various reasons and have managed to survive for many years!! My assumption is there are various theories about these drugs none of which are the final word. For my allergies and post nasal drip I use a nasal spray Azelastine of which very little is absorbed by the body (allegedly) combined with a spray of a steroid like flonase. These are complicated issues.
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