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Loss of voice after Arikayce nebulizer

Posted by saminatt @saminatt, Mar 20 8:31am

I am 70 years old, still working part time. I was started on triple antibiotics a year ago. My sputum is still positive after 1 year of triple therapy. I started on Arikayce nebulizer last week. 4 days after, in the morning I lost my voice. Could'nt even whisper or cough. No pain or difficulty breathing! My ID doc said to hold nebulizer for 1 week. I can whisper now but so difficult at work.
Any advice on how and when to restart the nebulizer?

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saminatt | @saminatt | Apr 27 8:35am
In reply to @saminatt "Interesting!! Amikacin does not have carcinogenic effect. Not sure if it has any teratogenic effect. If..." + (show)
@saminatt

Interesting!! Amikacin does not have carcinogenic effect. Not sure if it has any teratogenic effect. If anybody pregnant, they should not be close by! If anybody has info please share!

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Screen shot of side effects of Arikayce!! See below
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hbcupcake | @hbcupcake | Apr 27 8:55pm
In reply to @bayarea58 "@hbcupcake how do you know you have ulcers on your lungs from albuterol/saline? It’s an interesting..." + (show)
@bayarea58

@hbcupcake how do you know you have ulcers on your lungs from albuterol/saline? It’s an interesting comment I have not heard before.

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I lost my voice shortly after my last bronchoscopy in Feb and haven't gotten it back yet. I went to an ent who went down with a camera and showed me them. He said if it clears up in a couple of weeks it's just from the frequent breathing treatments over time (4x a day for 2 weeks, 3x a day for 7 weeks now just 2x a day: albuterol then hypertonic saline). Because the stronger percentage (7%made things worse and dropping to 3, then 0.9% made it better he deduced that's the reason. I'll find out in a couple of weeks when I go back. Vocal cords can get infected with mac, aspergillosis (since I'm still positive) or yeast infections from inhaled steroids. If I'm not clear I'll have to do a biopsy.

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Mary | @mjb24 | May 14 8:02pm
In reply to @saminatt "Interesting!! Amikacin does not have carcinogenic effect. Not sure if it has any teratogenic effect. If..." + (show)
@saminatt

Interesting!! Amikacin does not have carcinogenic effect. Not sure if it has any teratogenic effect. If anybody pregnant, they should not be close by! If anybody has info please share!

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I was told by Arikayce care coordinator to not have people or pets within about 4Ft when doing treatment because if they needed amikacin in the future it may not be susceptible.

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kathyjjb | @kathyjjb | May 28 9:13pm
In reply to @saminatt "I got my voice back somewhat after 1 week off of Arikayce. I did restart the..." + (show)
@saminatt

I got my voice back somewhat after 1 week off of Arikayce. I did restart the nebulizer 5 days ago. Only slight hoarseness not like complete loss of voice that i had before! As my doctor and care team suggested I am sticking to night time like 7 at night and also rinsing my mouth after. So far so good! Thank you for sharing your experience! Long way to go!

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Hi Sam, have you had any recurrence of voice loss? I went off Arikayce after 3 weeks, my voice down to a whisper. Not much improvement and it's been 6 days now. Looking for advise as to how to get voice back.
Kathy

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1 reply
saminatt | @saminatt | May 29 10:39am
In reply to @kathyjjb "Hi Sam, have you had any recurrence of voice loss? I went off Arikayce after 3..." + (show)
@kathyjjb

Hi Sam, have you had any recurrence of voice loss? I went off Arikayce after 3 weeks, my voice down to a whisper. Not much improvement and it's been 6 days now. Looking for advise as to how to get voice back.
Kathy

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Hi, Kathy, my voice is never back to normal although better than before. I couldnt even cough at that time. If you can cough it is getting better. It took me more than a week to be heard. I was whispering at that time. I think talking might have helped to get some voice back! I am having cough if i talk more or laugh!
Hope it helps you. Lots of hot water with honey and ginger!

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1 reply
kathyjjb | @kathyjjb | May 29 12:20pm
In reply to @saminatt "Hi, Kathy, my voice is never back to normal although better than before. I couldnt even..." + (show)
@saminatt

Hi, Kathy, my voice is never back to normal although better than before. I couldnt even cough at that time. If you can cough it is getting better. It took me more than a week to be heard. I was whispering at that time. I think talking might have helped to get some voice back! I am having cough if i talk more or laugh!
Hope it helps you. Lots of hot water with honey and ginger!

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Hi Sam, I’m just wrapping up my 2nd week at NJH, and had a consult with speech therapist.
She informed me that Arikayce causes thrush or can cause, which results in loss of voice. My voice is slowly getting better and she said is it doesn’t resolve by next Monday or Tuesday to contact my local doctor and get on an anti fungal medication called Diflucan. Another name for Diflucan is Fluconazale.
Have you tried that? She said there’s many causes for voice loos but that’s what has resolved the Arikayce loss of voice.

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