Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me -- I wish the very best of luck to you.
Annie x

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