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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem side effects, I'm very sorry about that,
I had a full hearing test again today, and unfortunately my hearing has deteriorated since I started Arikayce. I thought so -- the tinnitus has increased, But I feel like I'm sort of '"trading off" a bit of my hearing in the hope that Arikayce will help kill this bug,
The Arikayce does feel like it is doing something -- my lungs sure feel worse! I hope it knocks out this bug.
I see my pulm doctor in 3 weeks -- don't know where we'll go from here.
Irene @irene5 I hope the Arikayce is still going okay for you.
And thanks Heather @heathert for being there for me!
Hugs to all of you, from Annie
Replies to "Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem..."
@anniepie @bnthorson @goatlady The big 3 antibiotics also cause hearing loss and tinnitis, I did not know that Arakayce also caused this. My hearing loss was from the big 3 unfortunatly. take care Heather
Thanks @anniepie so pleased I could help. take care Heather
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I also had bad diarrhea from it, it was kind of a two fold thing. I just didn't feel good on it. The tinnitus was almost deafening. Unfortunately, for me it was a bad experience. I was so hopeful that this would work for me. I have heard that it works wonders for other people. I am glad you are experiencing some benefits! That is wonderful!! I am still back at Square One, still on the BIG 3.
Diane (aka GoatLady!)