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Is Anyone Else Confused About All Those Inhalers?
MAC & Bronchiectasis | Last Active: Oct 13 6:56pm | Replies (65)Comment receiving replies
@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.
Replies to "@nana43. I'm so glad you brought up his question about a corticosteroid inhaler enhancing the environment..."
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.).
@nana43. Would you happen to have that article that you can share ? Thank you
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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.