Is Anyone Else Confused About All Those Inhalers?

@sueinmn Wow, Sue. Thanks for that! I've ALWAYS been confused by all the inhaler names and what they do or don't do! I saved that list in my files for future reference! You rock! Nan

Hi Sue! I just jumped on site to ASK a questions about inhalers -and this popped up! My question: Are inhalers needed for Bronchiectasis AND/OR MAC? ( I can’t find anything that says it is medically needed)
I have been on Trelegy for a little over a year for Bronchiectasis because prior Pulmonary doc said my wheezing was because I had an asthma component to my Bronchiectasis. When I started the inhaler- the wheezing stopped- so I believed him. Now I find out I have/ had MAC and that the steroid inhaler could have actually been a factor in getting the NTM disease.
Current specialist said we would talk about at next visit in 3 months. I quit taking about a week ago. No wheezing but I have had to hit rescue inhaler a couple time for shortness of breath. SO, There’s the back story….back to my original question, Is an Inhaler even needed?

My pulmonologist and I discussed the combos. Her opinion is that the amount of steroid in am inhaler will not cause or worsen MAC, but oral steroids can because the dose is much greater.

@nana43. I'm so glad you brought up his question about a corticosteroid inhaler enhancing the environment in the lungs that encourages NTM infection. I recently came across a study that reported this finding. I had been using Arnuity Ellipta (an inhaler similar to Trelegy) for the last 5 years. It was originally prescribed for me by a pulmonologist I later found to be incompetent (knew absolutely nothing about bronchiectasis and MAC). Now I work with very competent doctors (pulmonologist and Infectious disease docs), and I brought the article to my ID doc and expressed my concern about the inhaler -- do I need it and is it the wrong thing for my condition? He knew about the finding and said this question often comes up and it's a tough call. If the inhaler helps you breathe, we don't want to take it away, but it's true that it could be making treatment for MAC more difficult. I question whether I needed the inhaler in the first place. I wasn't wheezing and don't have serious asthma. The whole thing is confusing and frustrating. The only lesson I draw from the experience is to always question a prescription: Do I really need this, and, if so, why? The pre-requisite however is that the prescribing doctor be competent and knowledgable about your condition.

You are correct about when yo use inhalers, and which ones.
In my case, I have no "evident" infection at this time, but asthma & bronchiectasis coexist in my lungs. For months I have been struggling with shortness of breath, chest tightness and rising heart rate at the simplest exertion (like putting laundry in the washer.) Nebs help, but being tethered to the machine repeatedly was not working well...So we are trying a different type of inhaler, with more long-acting meds, to get me back to being myself. As of today (#7 with no neb) - I am feeling better on the new med, even after a 3 day camping trip with 7 adults, 5 kids, 1 dog and a whole bunch of drop in visitors. I can't wait to see how I'll feel after a shower and some rest.

Absolutely- thanks for the validation too! I have read several studies indicating that the steroid in these inhalers ( especially if used daily for a year or more) can definitely increase your chances of getting MAC disease! There is a higher risk if you already have lung disease such as Bronchiectasis, as I did. It just shows that you need to be your own health advocate. Do your homework, question your medical team, medications, and most of all listen to your own body! I took myself off the Trelegy and at 2 weeks-no wheezing. I have shortness of breath but mine is tolerable for the most part. (I have used the rescue inhaler twice during this 2 weeks since stopping Trelegy.).

I'm glad that is working for you.

I was using my rescue inhaler for SOB 5 or more times a day, but it did nothing for the weight on my chest. And it sent my tremors into overdrive. This new, slower drug, with a lesser amount of budosenide, seems to be working for me now. If I have a Bronchiectasis exacerbation, we'll have to reconsider.
Each of us needs to make our best decision for our lifestyle with the help of our docs. My primary is going to like this too - she has been trying to get me to "try something else " for well over a year.
Sue

Adding to Sue's amazing comprehensive info on inhalers:
Short acting beta agonists (SABA) (Albuterol, Levabuterol) cannot be taken more often than 4-6 hours. It is dangerous to take them more often.
Long acting beta agonists (LABA) are taken every 12 hours but a little cheating (10-11) hours is usually ok. Combination inhalers (Symbicort) may contain a steroid. If it does, it is very important to rinse our mouths after taking it because any steroid that doesn't make it into the lungs and remains in the mouth presents an environment where thrush may grow.
Inhalers work best if the directions, such as holding breath for ten seconds and waiting a minute between doses, are followed.

Almost all inhalers were developed for asthma, not copd or bronchiectasis.

@nana43 @sueinim

Thanks so much for your responses. I have to say this forum has been an absolute godsend to me over the last 5-6 years of experiencing the nasty progression of bronchiectasis and MAC. Two and a half of those years were spent enduring the Big 3 meds in a failed effort to rid my body of MAC. It is a strange and wonderful comfort to be connected at a distance to a large compassionate group enduring many of the same challenges and sharing information that's helpful to others, certainly helpful to me. My current reality is the loss of 20% of my weight. My pulmonologist's response was, "well, that's the disease." My ID doc said nothing. I want to regain some weight. Does anyone in this group have suggestions based on successful weight gain after this kind of loss?

I looked and found an old post about gaining weight during treatment: https://connect.mayoclinic.org/discussion/could-mac-treatment-cause-food-to-taste-bad/
I continued for over a year after the antibiotics before I began to gain, now after 2.5 years I'm almost back to my pre-illness weight.
Sue