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Anyone in the Encore Arikayce study?

MAC & Bronchiectasis | Last Active: Jul 29 3:05pm | Replies (30)
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@helen1000

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.

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Replies to "Symptoms of ototoxic drug reaction include: a) Development of tinnitus in one or both ears. b)..."
Sue, Volunteer Mentor | @sueinmn | Jul 28 8:37pm

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.

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