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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Thank you Irene for this info - can you tell me about your use of Arikayce? Do you take it daily or only when you get sick with pneumonias? I did go on the 18 month regimen for MAC once it was diagnosed back in 2015. That cleared the MAC but since then I continue to get periodic cases of bacteria (pseudemonas) in my lungs which bring back a bad cough and feeling sick. I took Levofloaxin for that and it always cleared it up. But now I can't take that anymore, due to side affects. So I am looking for a new drug to try if and when I get another bacterial infection. Perhaps the night sweats are telling me that the MAC is coming back, but I do not have that strong and persistent and productive cough that the MAC caused me 5 years ago. Were your night sweats happening, even when you felt fine? Pam
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Pam, feeling “fine” has not been in my vocabulary since I was diagnosed with MAC about the time you were (2015). I am certain I had it sooner, but that’s when it was diagnosed. The Big 3 were very hard on me, so in June the inhaled Arikayce was added daily. Arikayce is prescribed for those patients who have difficulty with the Big3 or for whom the Big 3 did not achieve the desired result. I will be on the Arikayce for at least year in addition to two of the Big 3. The night sweats did happen when I was not necessarily feeling awful. That’s when I knew something was up. They happened initially when I went on the Arikayce because in my mind’s eye there was a war going on inside my body. I am not having them now, so I am hopeful the Arikayce is winning the war! I was never ever a coughing kind of gal. I am coughing now with the addition of the Arikayce. Talk to your doctor about adding it. It is very pricey, but there is help with that piece. Good luck! Irene