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Arikares concerns

MAC & Bronchiectasis | Last Active: Mar 21 7:53am | Replies (19)

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@tte

I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last May. Still on the big 3. I saw Dr. Pamela McShane in Texas. She ordered the Arikayce for me. So far , I have only had a little loose stool that cleared right up with BRAT (bananas, applesauce, rice & toast). My voice a few hours after doing the inhalation sounds low & like I should be a disc jockey on the radio. Then it goes back to normal. My Arikares program nurse that came to my house said I can try doing this mid way through inhalation: pause the special nebulizer, rinse my mouth/gargle for a bit, then resume inhalation, that really helps. After completing the med, I rinse my mouth & gargle with warm water, brush my teeth, then have a cup of herbal chamomile tea with honey. That has helped. I already had hemoptysis in 2023 when I had multifocal pneumonia, so I guess that is why I'm not too freaked out. I'm willing to try & get rid of this infection so that I may be able to feel better & live longer to watch my granddaughters grow & be there for them. I am 67 yrs old. My biggest problems are the fatigue & poor appetite & awful weight loss, but I already had that with the Big 3 (rifampin, ethambutol, Azithromycin). The Big 3 did decrease the # of innumerable nodules in my lungs, but I still have not flipped to MAC negative. The Arikayce was offered to me & I accepted. Fingers crossed. Good luck to you.

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Replies to "I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last..."

They want me to start arskayce because infusions caused hearing issues. Am concerned about cost. Am on 4 oral antibiotics also

P.s. I just got tested after a year so far on meds. I am not coughing up flem but I tried. They said at first it probably wasn't enough. The I.D doc came back and said, they could test what I had done. He said he would say he's 80% that I'm negative? I get CT this week. It's been a little while.
I'm on the same meds you are..

When we're you diagnosed with MAC?
When did they start your treatments?