Mac question: Arikayce Inhaler Antibiotic

Hello Jennifer. I sometimes go on inhaled tobramycin for 28 days when my lungs start to feel like they are getting infected. During the first two weeks on it; I feel like it is making things worse. I'd feel more congested, had wetter lungs and would cough more. By the end of the 28 days; it would all clear up and I would feel good as new again. My guess is that the 'toby' was loosening up mucous plugs, etc and getting deep down into my lungs, and is why I would get those initial side effects. I was on an every-other-month regimen on this drug for four yrs. Now, I do it as needed. Try to hang in there with your arikayce if you can. Sometimes things have to get worse before they get better.

Did you have Pseudomonas? Anyway I can get info is welcome.
Thanks,
Ellen

I am so sorry you are going through this! I took Amikaycin for 2 weeks but had to stop Because of side effects. I then started Arikayce two months later. I didn’t lose my voice but was very hoarse. Unfortunately had to stop it too. One strain of MAC I have is resistant to azithromycin. Yesterday I started Clofazimine. . So far so no side effects! Still on the Big 3 too.
Wishing you relief from the lost voice!

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??

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??

@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

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.

It's good to hear that the voice will come back. Not being able to communicate verbally is isolating and discouraging, but we have to look for the greater good that will come out of this - like getting rid of as much of this horrible bacteria as possible. (My ID doc says we'll likely not get rid of it completely which makes me very sad, to put it mildly.) Thank you!

Thanks for your comments about the Clofazamine - I really am nervous about taking it. I previously had some serious adverse side effects from the main antibiotics (Rif and Eth) and had to stop taking them. I am currently taking the second-string of antibiotics which I understand are not as effective. 🙁 I've had digestive issues and diarrhea since Oct (when I started with Meropenem IV) since I've been on this alternate 4-atb regimen. (btw ... a little puzzled since amakacin and Arikayce are the same, aren't they?) *** anyone else taking clofazamine?? ***

I took amikaycin first because of insurance. I did take it inhaled. The difference between the two is how it is delivered. Arikayce is enclosed in a fat globule. My side effects were a little different but with both I developed a lump in my throat.
Thank you for the information on the other drugs. I had not heard of them. I have never completely been free of the bacteria since I was dx in 2002. This is my 3rd time on meds. Wishing you complete recovery!!!