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Mac question: Arikayce Inhaler Antibiotic
MAC & Bronchiectasis | Last Active: Mar 5, 2022 | Replies (73)Comment receiving replies
hi. I've been taking Arikayce since Oct 2020, with the predicted hoarse or absent voice and worsening tinnitus. It's the only thing that helps me cough out the tiny bit of sputum that I do. I'm used to it now, but the Arikayce rep said it just took a little time to get the voice back ... well, the voice is still not back and I'm just presuming that it won't come back until I stop taking the Arikayce. btw, I tried all sorts of lozenges, drinking hot water after, gargling with hot water or salt water ... nothing worked so I just deal with it. .... However, I'm very curious about the clofazimine -- my ID doc wants to start that and, from what I've read about it, I really am wary of it ... especially its 70-day half life! Please tell me how it is affecting you - like, did your skin turn orange-pink-brown??
Replies to "hi. I've been taking Arikayce since Oct 2020, with the predicted hoarse or absent voice and..."
@bnthorson My voice did not come back completely until I stopped the Arikayce but it wasn't bad like when I started and had no voice. I only ever had small sputum also but a tiny bit was enough to test for MAC which was great, take care Heather
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I have been on Clofazamine for 2 1/2 months and have had minimal side effects. I have not turned orange, but my face does look a little tan. My skin is quite white and I expected the orange from what I had read. The most significant side effect has been weight loss and digestive issues. I have lost another 5 lbs on Clofazamine, and I am working hard to gain some back. My digestion was not good anyway because of the big 3, so it is hard to discern how much is due to Clofazamine, Like you, I cough up minimal sputum. I lost my voice with amikaycin, and it returned when I stopped taking it, I did not lose it with Arikayce but I only took 4 doses. Overall, I am ok with the Clofazamine, and am just hoping it will get rid of the resistant strain of MAC that I have.