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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
Oh no, back on the NTM meds! I really hoped the Arikayce would clear you up for longer. But I guess it's all just 'pot-luck' really, as we say in Australia.
Are you on them every day again?
I've been put back on the drugs at 3 days per week instead of every day. I'm not on Rifampicin because it caused havoc for me for a year and interacts with too many other meds I need to take.
I'm on Clofazimine instead, with Ethambutol and only half a tablet of Azithromycin -- 250mg. Unfortunately both Clofazimine and Azithromycin have been known to cause Long QT, so it's a bit of a double-whammy for me.
My Cardiologist says it's inevitable that I will get risky Long QT intervals again while on these 2 meds -- but there's not much choice really. Just have to watch it, and stop the meds again when it happens.
Yes please keep an eye on it with monthly ECGs, Heather.
We really ARE in this together
Hugs from Annie
Replies to "Oh no, back on the NTM meds! I really hoped the Arikayce would clear you up..."
Hi Annie can I ask you a question we’re you just on Arikayce alone because I’m on that now and was wondering what happened with you? You were off for little time and it came back the MAC?
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Hi @anniepie, my Dr says that Arikayce is good to clear mac up for a while but like the other meds it often returns, unfortunatly. Yes I am on the big 3 daily, but apart from the QT interval its going well, I will keep an eye on my ECG like you. I hope your pills are not causing trouble. We are not far from each other,what part of Aussie are you in, hope aussie covid is improvng. We are in this together, which helps alot. Take care Heather