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Has anyone taken gentomicin?

MAC & Bronchiectasis | Last Active: Aug 23, 2021 | Replies (14)
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@brigby

@rits @sueinmn

Hi there, If it is any help to you:

I was prescribed Gentamicin (taken as a dissolving powder capsule inhalant during my daily Navage sinus rinse, along with Budesonide) by my ENT at Stanford, beginning in 2016 when I was diagnosed with Bronch + m. Abscessus in my sinuses and lungs. I was going downhill with recalcitrant pneumonia at the time.

I’ve stayed on it and by God’s Grace have been able to gain weight, get back to exercising at a high level 5x/week, teach full time, enjoy grandkids.

My ID Doc and Pulmonologist are both OK with this regimen, along with daily airway clearance Nebbing 7% sailine + vest + postural drainage + huff cough, etc.

My Gentamicin is not FDA approved, so it costs about $80 a month, but well worth it for me, since oral macrolide treatment would tear up my GI tract. It seems to keep my sinuses quiet, which seems to keep my lungs quiet.

I didn’t know it’s an Arikayce (sp?) relative, Sue, thank you! It’s been difficult for me to find much research on it, I would appreciate knowing more about Gentamicin if you can direct me?

Blessings, all.

Brenda

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Replies to "@rits @sueinmn Hi there, If it is any help to you: I was prescribed Gentamicin (taken..."
Sue, Volunteer Mentor | @sueinmn | Aug 23, 2021

Hi Brenda -
I was able to find this article, which sounded very positive on the use of Gentamicin plus 7% saline. https://www.nature.com/articles/s41598-020-61413-4 It's very heavy reading, but contains links to some other articles at the end.

I hope it helps. I will definitely talk to my pulmonologist and ID doc about giving it a try if I have to be treated again! The Big 3 almost did me in in 2019.

Sue

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rits | @rits | Aug 23, 2021

Thank you so much for replying Brenda. I'm so sorry you have bacteria in both your sinuses and lungs. But how great that your doctors found something that works so well for you and congratulations on continuing the onerous and time consuming treatments all these years.

My copay for gentomicin is $25. I won't know what my insurance paid until I get the explanation of benefits.

The article Sue found is very interesting and explains a lot I didn't understand. Sue is a fantastic researcher and we are lucky to have her. I'm going to comment on the article separately. The study concerns nebbed type of gentomicin that Jennifer and I are taking

Thanks again,
Rita

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