Water at freshwater lake

@sandykayhud Hi. I searched and searched the internet to try to find the answer to your question. I have not come across anything that says that Arikayce can cause you to lose your voice permanently. It is a fairly newly released drug, so it has a short history. I had a similar thing happen to me when I first started on inhaled tobramycin. I am now very used to it and it doesn't make me hoarse any longer. It took me several weeks to get beyond the hoarse stage. Are you continueing on with it?

I started the Arikayce July 23. The training from the nurse and support from the pharmacy was great. I took it for 7 days. During that time I too coughed up the gunk after treatment and coughed more than I had before treatment. The third day i began with hoarseness and then completely lost my voice. My pulmonary dr wanted me to try to continue but after 7 days he decided I needed to stop. I have been off the Arikayce now for 4 days. Not coughing as much but still have no voice at all. As I understand it about half of the people in the trials had the voice problem so I was not surprised. Just hoping it is temporary. I do not think at this point thqt my Dr will put me back on it. He is trying to get me an appointment with a MAC specialist. I do feel that if I could have continued the treatment it would have helped. Just need to decide if I can live without talking....HA

Thanks for the encouraging reply. My pulmonary dr has taken me off Arikayce at this point. My voice has been completely gone now for 10 days so he has no plans to put me back on at this point. He says to give it time so I am trying to patiently wait to see what it does. I am not able to speak and can only barely whisper. He is also trying to get me into a MAC specialist at Birmingham Ala. Maybe he has more answers.

@sandykayhud Oh dear...that seema like a long time to be voiceless. Have you tried speaking to the Specialty Pharmacist, where the drug came from? Sometimes they provide better answers than the drs concerning medocations. Especially these newer ones. Please keep me posted. I pray your voice comes back soon.

I just started arikayce last week. My trainer recommended swallows of water a few times during the treatment. Also one of her patients uses throat coat and has found it to be a help as far as preventing raspy throat.

I’ve been on arikayce since the first of August so not very long and this morning I woke up extremely hoarse. In fact can hardly talk. I’m going to skip my treatment today and see how it is tomorrow. My cdc doc is not in until Thurs. My throat is not sore but lots of thin mucus so hard to rest the vocal cords. I live alone so I’m not talking.

Throat coat tea is worth drinking when using arikayce for me - my throat was raspy after first treatment. It’s very soothing and adding raw honey seems to help.