1. < MAC & Bronchiectasis

US Food & Drug Admin was interested in NTM patients' drug experiences

Posted by Paula_MAC-2007 @Paula_MAC2007, Aug 9, 2016

Wondering about research for better drugs for NTM / MAC? I just stumbled on this flier ...
The US food & Drug Admin had a public meeting of NTM patients & caretakers last October 15, 2015.

https://www.ntminfo.org/images/media/News/pfdd.pdf

Here's further information about that event:
https://www.eventbrite.com/e/nontuberculous-mycobacterial-lung-infections-patient-focused-drug-development-public-meeting-registration-17523776086#

I sure would like to know the outcome of this public meeting.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

mokie | @mokie | Sep 5, 2023

I am brand-new to the site. I found the following paragraph, but can't recall where I found it on this site. Could someone advice me on how to find this (the technology of doing so?). I have resistance to clarithromycin, so they want to try amikacin. I am afraid of hearing loss and kidney troubles, so I thought the regimen below might work for me.

"Was diagnosed with mac in 2005 &amp; refused traditional treatment of the
Big 3 antibiotics. After years of illness, I began treatment at Mayo
Clinic in 2013. I was put on Cipro for 10 days bi-monthly, on the 'off'
months, on doxycycline for 10 days. Neg after 1 yr., but stayed on the
meds until Pseudomonas in 2016, that was treated with tobramycin
and cipro. Was gone in 30 days and it knocked out the cough I had for
the last ten years as well. Was taken off all antibiotics this year (2020)."

REPLY
1 reply
lilianna | @lilianna | Sep 6, 2023
In reply to @mokie "I am brand-new to the site. I found the following paragraph, but can't recall where I..." + (show)
@mokie

I am brand-new to the site. I found the following paragraph, but can't recall where I found it on this site. Could someone advice me on how to find this (the technology of doing so?). I have resistance to clarithromycin, so they want to try amikacin. I am afraid of hearing loss and kidney troubles, so I thought the regimen below might work for me.

"Was diagnosed with mac in 2005 &amp; refused traditional treatment of the
Big 3 antibiotics. After years of illness, I began treatment at Mayo
Clinic in 2013. I was put on Cipro for 10 days bi-monthly, on the 'off'
months, on doxycycline for 10 days. Neg after 1 yr., but stayed on the
meds until Pseudomonas in 2016, that was treated with tobramycin
and cipro. Was gone in 30 days and it knocked out the cough I had for
the last ten years as well. Was taken off all antibiotics this year (2020)."

Jump to this post

I was having 3 times a week amikacin infusion and tolerated it really well. The only. Side effect was that just after the infusion I felt tired and had to relax for about 2 hours.

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