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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
My ears started ringing so loudly that I couldn't even hear myself think and I had terrible diarrhea that lasted for almost a month. The ringing ears started on the second of use. It was terrible, so my ID doctor took me off of it almost immediately. I have heard that some people have fantastic results with it. I was so hoping that I would be one of them. Not meant to be!
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Thanks for lettimg me know @goatlady. You poor thing! I hope you recivered quickly after stopping the Arikayce. I;ve read that the original drug -- Amikacin ;; can cause tinnitus and deafness. I was really hoping the liposomal inhaled form wouldn't do that. It's all just luck isn't it?
Sounds like a worse form of what happens for some of us with Azithromycin. That gave me tinnitus in the first 2 weeks, and continues to give me some diarrhea too. Now after 2 and a half years it's also giving me Long QT heart problems as well. I need to be ECG monitored every 2 or 3 weeks. (I just had another bout of that).
If I hear of any alternatives to Arikayce in the future, I will let you now.
Hugs from Annie