Hi Kathyhg! I love our condo pool and I love going underwater to swim. I ordered a good swim mask that goes over my nose and eyes. It works well for me. I keep my mouth shut— Not sure if ok by professionals —but—it’s fun.
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At this point I am just waiting to try and get voice back. It has been completely gone for over a week. My pulmonary dr is trying to get me in at UAB with dr that specializes in MAC so will probably not start anything till I see him. Have you had anyone who tried the Arkayce and lost their voice who did not get it back? Getting sorta concerned. My husband may enjoy the peace and quiet but even he is getting ready for some noise from me!
Liked by Terri Martin., Volunteer Mentor, Brenda R.
@sandykayhud My voice went completely for 3 days then was just there for a week and then gradually got a bit better but not completely right (but fine) a wee bit husky for months. Strepfen, anti-inflammatory direct to the throat was the best. I hope you come right soon, I know how frustrating it is, cant even answer the phone.
Liked by Terri Martin., Volunteer Mentor, Brenda R.
@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?
Liked by Brenda R.
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.
Hi all https://pubs.rsc.org/en/content/articlehtml/2019/mh/c9mh00726a some reading about a process that can kill MAC qnd other gram positive and negitive bugs from a reputable source.
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.
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@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 did talk to the Kroger Pharmacy (that is where my Arikayce came from) when I first lost my voice. They did not offer much advice and really said they had rather talk to my pulmonary dr if he wanted to call. Basically they just gave me the same thing that was listed as the side effects in the materials they sent me. I do not know if my dr talked to them. He just said to stop the Arikayce. Today he is putting me on prednisone and diflucan to see if that will help with the voice. Still waiting to try to get in with MAC specialist in Birmingham. Lord is teaching me patience and I am not a real good learner..HA
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.
@windwalker
@sandykayhud Hi. Have you asked your dr about substituting the Arikayce with Colistin or Tobramycin?