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Arikayce and airway clearance

Posted by marthamac @marthamac, Jan 11, 2023

This is a question for anyone who has used Arikayce. I'm just adding IV imipenem and inhaled Arikayce to clarithromycin and ethambutol (stopping the rifampin) to treat my combined MAC and abscessus. I'm trying to figure out how to fit all this into my day, along with enough nutrition and a daily walk for exercise. The IV will take about 2 hours twice a day, 12 hours apart, so it's kind of tricky. Is it a good idea to do the albuterol, saline neb, aerobika, arikayce all in one run, or is it better to separate the arikayce and do it at another time? Has anyone done the airway clearance and/or arikayce while the iv infusion is going through a picc line? I gues I worry about shaking it all up in there! Any tips for managing all this would be greatly appreciated!

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formergardener | @formergardener | May 30 12:32pm
In reply to @laureltn "Ah, gotcha! My pulmonologist didn't tell me to wait more than five minutes between albuterol and..." + (show)
@laureltn

Ah, gotcha! My pulmonologist didn't tell me to wait more than five minutes between albuterol and nebulizing saline/Aerobika/vest (I do the Aerobika inline with the saline and wear the vest at the same time, all for 20 minutes).

But yes, I think in that situation, that's the best you can do. I didn't use a bronchodilator before the vest and Arikayce, and my pulmonologist and I have discussed me discontinuing it after I finish my medications in 10 days. (yay!) I will probably use it maybe 3 times a week with the vest, just to see if it makes much difference, though, and report back to him at my next visit.

Best of luck!
Laurel

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Wow- you are almost finished with meds!!!!

I have read quite a few accounts of people using the Aerobika and nebulizer at the same time. Do you find that it is as effective as using each separately? It sure would cut down on the time! Maybe I need to try this.

As to waiting 15 minutes after the Levalbuterol and the nebulizing, I feel that it gives my airways some time to open. Sometimes I wait 30 minutes and notice it more.

Anything that works well and also decreases airway clearance time is a win win, though.

REPLY
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laureltn | @laureltn | May 31 7:33am
In reply to @formergardener "Wow- you are almost finished with meds!!!! I have read quite a few accounts of people..." + (show)
@formergardener

Wow- you are almost finished with meds!!!!

I have read quite a few accounts of people using the Aerobika and nebulizer at the same time. Do you find that it is as effective as using each separately? It sure would cut down on the time! Maybe I need to try this.

As to waiting 15 minutes after the Levalbuterol and the nebulizing, I feel that it gives my airways some time to open. Sometimes I wait 30 minutes and notice it more.

Anything that works well and also decreases airway clearance time is a win win, though.

Jump to this post

Good morning! I do find it as effective, doing them in tandem (well, actually in trio because it's three at once). Now, I also follow my treatments with some form of exercise every day. We will walk 3 to 5 miles, go for a hike, do a cardio workout, weight training, or hop on a treadmill. I can usually continue to clear a little more over the course of that activity.

I tell everyone in my support group that our NTM/BE journey is as individual as our fingerprints, and that we each need to navigate it in the ways that work best for us. Some of the people in my group find autogenic drainage the most effective, others traditional AC, etc. I think the key is try different combinations and see how you do and change it up every now and then to see if you're falling into a rut.

I have been super blessed in that my Arikayce treatments really never caused insurmountable side effects and knocked out the MAC once and for all -- and it was likely becoming resistant to some or all of the Big 3. Hoping I can stay clear and get on Brensocatib when it becomes available.

Laurel

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formergardener | @formergardener | May 31 7:51am
In reply to @laureltn "Good morning! I do find it as effective, doing them in tandem (well, actually in trio..." + (show)
@laureltn

Good morning! I do find it as effective, doing them in tandem (well, actually in trio because it's three at once). Now, I also follow my treatments with some form of exercise every day. We will walk 3 to 5 miles, go for a hike, do a cardio workout, weight training, or hop on a treadmill. I can usually continue to clear a little more over the course of that activity.

I tell everyone in my support group that our NTM/BE journey is as individual as our fingerprints, and that we each need to navigate it in the ways that work best for us. Some of the people in my group find autogenic drainage the most effective, others traditional AC, etc. I think the key is try different combinations and see how you do and change it up every now and then to see if you're falling into a rut.

I have been super blessed in that my Arikayce treatments really never caused insurmountable side effects and knocked out the MAC once and for all -- and it was likely becoming resistant to some or all of the Big 3. Hoping I can stay clear and get on Brensocatib when it becomes available.

Laurel

Jump to this post

Thank you so much for all of the tips on your experience. Yes, I also try to exercise each day and find that it definitely helps to keep airways clear as well as giving me energy and clearing my head.

I have read about the Brensocatib as well as the Arena 1 trials. It seems as though the Arena has fewer side effects. The trio of bicarbonate, glutathione, and vitamin C has been very effective in trials- and it does not involve really drug induced side effects. It almost seems so simple, that you have to wonder what took so long. At any rate, so much progress is being made, and addressing the bronchiectasis in this way is what is really needed when trying to stay clear of MAC. There is so much reason to feel encouraged and hopeful.

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