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Airway clearance never worked for me. I tried it for over a year and could never get anything up. I even went to the outpatient lab and they tried different techniques to help but nothing worked. The Arikayce helps but after the procedure that is when shortness of breath happens. I have an appointment with my new Dr next week as we have moved and had to get all new Drs. Thanks for your reply I have been reading your replies for almost 2 yrs.
Replies to "Airway clearance never worked for me. I tried it for over a year and could never..."
Hi Laura, I have asthma too and BE and MAC. I am not on any antibiotic currently. My I.D. doctor refuses to prescribe Arikayce because he says he sees too many people in the ER with severe bronchospasm after using it. However it has been on my mind as some people here say they have no side effects from it. Something that really helps with bronchospasm is high molecular weight hyaluronic acid, I take it and feel it is very beneficial in general for my airways and for other parts of my body too (joints, eyes, skin). There is documentation to that effect on the NIH website. you may want to ask your doctor about it, or not.
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It sounds like you have what is known as Dry Bronchiectasis, which I am starting to believe is more common than we once thought.
If I were in your situation, I would probably ask my doctor about the possible things to help with the shortness of breath.
Assuming you are like many of us, and would prefer not to add more medication to your life, first I would ask are there breathing exercises that can be taught by a respiratory therapist to help improve my lung capacity? This of course will depend on the overall condition of your lungs, but every little bit can help.
Then, I would ask is there a "rescue" inhaler I can use when this happens?
Finally, if already using albuterol or something similar, I would ask if there is something else in the treatment arsenal. For example, I also have asthma, and in addition to nebs, I was using my rescue inhaler (an SABA) way too much and still having shortness of breath and a tight feeling. My pulmonologist switched me to a combination inhaler that was previously used primarily for COPD. It is Symbicort (a LABA/ISC) - you can read about the different kinds of inhalers here:
https://connect.mayoclinic.org/discussion/is-anyone-else-confused-about-all-those-inhalers/
If the doctor feels the steroid is contraindicated, LABA meds are also available by themselves.
Good luck with the new doctor.
Sue