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DiscussionCavitary MAC/MAI and choosing no drug treatment ?
MAC & Bronchiectasis | Last Active: Sep 14, 2023 | Replies (21)Comment receiving replies
Replies to "Hello, I am not sure if this is helpful, but it's one person's experience with the..."
Hearing loss is much less common with inhaled amikacin compared to iv
I added Arikayce to standard treatment 2 years ago at 66
I had never had any MAC symptoms- like you, damage on CT and positive smears and cultures
I had a lot of coughing the first 1-2 months on Arikayce and my GERD was worse related to that , but then the side effects settled and my cultures converted to negative within 5 weeks and stayed that way ( fingers crossed)
In other words, Arikayce can be very effective and mostly tolerable after the first couple of months, so not something to be scared of
Good luck if you go ahead with it
Here is what I will tell you - Do it!! Cured me!! I have other stuff now, but the inhaled version did the trick!! I had no side effects! Wishing you well! Irene5
I have nothing to offer in the way of advice for your situation other than these guidelines from Dr. Huitt regarding how best to manage GERD.
I’m glad you’re seeking second opinions and now being diligent and considering all options for yourself.
I agree with what your present second opinion Dr said as far as no one seems to have all the answers with this. It seems the best we can do is educate ourselves with what’s out there and seek as much advice and opinion from the experienced dealing with it and the best Drs and health facilities accessible.
I wish you good health and success with whatever options you choose moving forward.