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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
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!)
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Hi Diane -- nice to use your name! Thanks very much for replying.
You are not alone in having problems with Arikayce -- quite a lot of people are forced to drop out due to big side effect problems. Up to one third of all people who are put on it apparently.
Like you I wish I was one of the people who could just sail through without too much trouble!!!
Did you also have breathlessness -- even after using salbuterol -- and much worse lung problems when using Arikayce? (I know it makes many people cough a lot, but I mean worse bronchiectasis or lung disease as well).
I really don't know what's happening. Today it's so rough I think I might either have to delay the Arikayce or stop it for a day -- every day is getting worse on my lungs.
Diane, Heather, Irene (@goatlady, @heathert, @irene5) and Jenny, while on Arikayce, did any of you also feel like your lungs were really getting kicked around and / or feel a lot more breathless too?
Annie