1. < MAC & Bronchiectasis

Has anyone taken gentomicin?

Posted by rits @rits, Aug 21, 2021

My doctor has prescribed the antibiotic gentomicin to reduce the mega amounts of pseudomonas in my lungs. (28 days on 2x daily and 28 days off). It is an inhaled drug and I plan to start it Monday. I would appreciate hearing about any experience you had with this drug and also suggestions about the timing of how an inhaled drug works with airway clearance. I skipped the evening ac on the 3 nights a week I took Arikayce but this one is taken every day.

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

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

Jump to this post

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

REPLY
1 reply
rits | @rits | Aug 23, 2021
In reply to @brigby "@rits @sueinmn Hi there, If it is any help to you: I was prescribed Gentamicin (taken..." + (show)
@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

Jump to this post

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

REPLY
rits | @rits | Aug 23, 2021
In reply to @sueinmn "Hi Brenda - I was able to find this article, which sounded very positive on the..." + (show)
@sueinmn

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

Jump to this post

Thank you for finding and sharing this article, Sue. I haven't read the whole (long) report on the study but what I did read is fascinating.

First, the report is from a study in Taiwan. Don't you love that scientists in other countries are also working on our disease?

This is what I gathered from what I read: My gentomicin is compounded and is kept frozen. When I called the pharmacy about defrosting she stressed that the medicine was made from my doctor's orders specifically for me. I was confused about why an antibiotic is made just for me.

The study is looking at the antibiotic gentomicin mixed (compounded) with 7% hypersonic saline and concludes that inhaling the combination drug not only kills more pseudomonas than gentomicin alone but also affects biofilm in lungs which provides a hospitable place for pseudomonas to grow.

Because I can't use 7% saline or 3% for that matter, my vials consist of gentomicin compounded with .9% saline. I trust Dr McShane that my combination will work.

Jennifer, if you read this, are your vials of gentomicin compounded with 7%? Curious!

I still need to figure out how to schedule inhaling the compounded gentomicin and airway clearance which in my case consists of nebbing .9% saline, aerobika and vest. This morning's plan did not work out but I did get it all done eventually despite a bronchospasm scare.

Thanks for the research, Sue, and for everything you do for the group.

Rita

REPLY
rits | @rits | Aug 23, 2021

Oh, I am so stupid. Jennifer, sorry. I just remembered thst that you are taking colistin, not gentomicin. Duh.

REPLY
View MoreView Less
Please sign in or register to post a reply.