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Arikayce question

Posted by lvnl @lvnl, Oct 9 9:04am

Hi, does anyone have the experience of coughing up phlegm after doing their Arikayce inhalation? I'm on week 3 of either Arikayce or placebo (in a study) along with ethambutol and Azithromycin. I do saline airway clearance before doing the Arikayce-or-placebo inhalation. I am coughing up phlegm after the arikayce-or-placebo and am wondering if that's a positive effect of the medication or if I'm coughing up the med & losing its effect! Thanks to this group for all the shared experience & insights!

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lvnl | @lvnl | Oct 12 10:39am

I figured that :-). My response is right before your correction.

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irene5 Irene Estes | @irene5 | Oct 13 3:07pm

Arikayce is generally given to patients who do not respond to the Big 3 or to patients who have tried the Big 3 for at least 6 months and just aren’t tolerating them well. I am not referring to a study just the general reason why patients are treated with Arikayce. While Arikayce is an awesome drug for killing MAC it can damage lung tissue. Pick your poison. I don’t know if that will improve after stopping Arikayce. I “assume” it would heal itself. Irene5

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jassa | @jassa | Oct 13 5:07pm
In reply to @lvnl "I'm getting Arikayce or a placebo, as part of a study of Arikayce with patients newly..." + (show)
@lvnl

I'm getting Arikayce or a placebo, as part of a study of Arikayce with patients newly diagnosed with MAC/NTM. I have not been treated before this. I don't know about others on this thread.

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I agree with the study. I wasted almost 2 years on the Big 3, and didn't do anything for me. I have 2 lesions / cavities. After starting the Arikayce...so far, my last CT scan showed shrinkage of my cavity. In hindsight, I wish I started with the Arikayce from the beginning. I still question why they want me to continue with the antibiotics that did nothing for me, along with the Arikayce. But I am reluctantly following the protocol.

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1 reply
Rick | @rstel7272 | Oct 14 7:26am
In reply to @jassa "I agree with the study. I wasted almost 2 years on the Big 3, and didn't..." + (show)
@jassa

I agree with the study. I wasted almost 2 years on the Big 3, and didn't do anything for me. I have 2 lesions / cavities. After starting the Arikayce...so far, my last CT scan showed shrinkage of my cavity. In hindsight, I wish I started with the Arikayce from the beginning. I still question why they want me to continue with the antibiotics that did nothing for me, along with the Arikayce. But I am reluctantly following the protocol.

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Monotherapy is usually discouraged as your body could quickly develop resistance to the antibiotic. This technique was actually developed during the hiv/aids epidemic of 1999

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1 reply
lvnl | @lvnl | Oct 14 7:37am
In reply to @rstel7272 "Monotherapy is usually discouraged as your body could quickly develop resistance to the antibiotic. This technique..." + (show)
@rstel7272

Monotherapy is usually discouraged as your body could quickly develop resistance to the antibiotic. This technique was actually developed during the hiv/aids epidemic of 1999

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Rick you are reminding me of how much we owe to the doctors and and the HIV/AIDS patients they treated. From what I've read, MAC/NTM was virtually unheard of outside of organ transplant patients with drastically suppressed immunity, until people with AIDS started dying from it.

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