Anyone in the Encore Arikayce study?

Symptoms of ototoxic drug reaction include:

a) Development of tinnitus in one or both ears.

b) Intensification of existing tinnitus or the appearance of a new sound.

c) Fullness or pressure in the ears other than being caused by infection.

d) Awareness of hearing loss in an unaffected ear or the progression of an existing loss.

e) Development of vertigo or a spinning sensation usually aggravated by motion which may or may not be accompanied by nausea.”

It is strongly suggested that if any of these symptoms develop while taking any medication, call your doctor immediately.

Antioxidants help with tinnitus
If you must take ototoxic medications, it is a good idea to also take antioxidants, in order to lower your chances for developing tinnitus.

Sounds like an allergic reaction. Speak to your doctor

Amikacin liposome side effects
Amikacin liposome can cause a serious allergic reaction that may lead to death. Stop using this medicine and get emergency medical help if you have signs of an allergic reaction:

wheezing, noisy breathing, cough, feeling short of breath;

itching, hives, swelling of your face, lips, tongue, or throat;

fast heart rate, feeling light-headed;

loss of bladder or bowel control;

nausea, vomiting, diarrhea, stomach cramps;

flushing (sudden warmth, redness, or tingly feeling).

Amikacin liposome may cause serious side effects. Call your doctor at once if you have:

ringing in your ears, changes in hearing;

cough (especially during the first month of using amikacin liposome);

trouble speaking;

dizziness, spinning sensation;

a light-headed feeling, like you might pass out;

breathing problems--chest tightness, wheezing, shortness of breath, coughing up blood; or

kidney problems--little or no urination, swelling in your feet or ankles, feeling tired or short of breath.

Common side effects of amikacin liposome may include:

fever, cough, increased mucus, sore throat;

hoarse voice;

headache, muscle pain, chest discomfort;

nausea, vomiting, diarrhea;

rash;

weight loss; or

feeling tired.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Here are articles about Stem Cell therapy to treat hearing loss , sounds very promising. 🙂
https://www.clinicspots.com/blog/stem-cell-hearing-loss
https://www.independent.co.uk/news/science/hearing-loss-stem-cell-treatment-therapy-b2407051.html

Let's be clear that Arikayce and/or inhaled Amikacin does not universally cause hearing loss.

This report shows people with refractory MAC, undergoing combination treatment including these drugs as well as Azithromycin, had a 23-33% chance of hearing loss. Remember, these people have already been treated one or more times with the standard Big 3 protocol.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7565500/
So, for someone beginning today with Big 3 plus Amikacin/Arikayce for the first time, we don't know what the chance of hearing loss might be, but it is probably less than someone who has been treated repeatedly over a period of years.

I can tell you I was treated with the Big 3 for over 1.5 years, with no noted hearing loss, and only a small increase in the tinnitus that I have had for over 30 years.

Continuing to assert that treatment "causes hearing loss" without adding the numbers is unfairly alarming to people who need to take the antibiotics due to the severity of their infection.

Yes Sue, you are definitely correct. 🙂 However take both Amikacin and AZ on a daily basis increases the risk. I am not trying to scare anyone here lol, just want to figure out some ways to detect hearing problems ASAP because hearing loss by Amikacin can be permanent and irreversible per my doctor. But your speech is always welcomed and appreciated. 🙂 It is a very good reference for most MAC patients who do not need to use Arikayce. Thanks for sharing!

Here is an online hearing test and it is recommended to do it on a weekly basis.
https://www.starkey.com/online-hearing-test#!/HearingTestLandingPrimary

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Thanks for clarification.

Don't ask what I just sent or how. I have no idea.

Linda

@jassa, here is the info about the Encore Arikayce study:
https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/