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.

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Hi Rits..i to have pseudomonas, and use Colistin every other month..I haven’t tried your drug, but I nebulize this drug 2x a day, at app 8:30 and 5:30 pm..Toby, and Cayston are also nebulized drugs for pseudo..it’s a miracle drug for me, along with nebulized 7 percent saline x2a day, and autogenic AC once a day at PM..lots of luck😎

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Oh, I think this needs to be discussed with your pulmonologist. It is important to know the formulation of the gentamicin, what other drugs you are using, and whether you also use a saline neb, as well as other details about your lungs and general health. That is beyond our capability here. Gentamicin is a relative of Arikayce (inhaled Amikacin) and Tobramicin but I would not assume that the process would be identical.
Sue

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@megan123

Hi Rits..i to have pseudomonas, and use Colistin every other month..I haven’t tried your drug, but I nebulize this drug 2x a day, at app 8:30 and 5:30 pm..Toby, and Cayston are also nebulized drugs for pseudo..it’s a miracle drug for me, along with nebulized 7 percent saline x2a day, and autogenic AC once a day at PM..lots of luck😎

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Tks Megan. Your experience is very helpful. I have a lot of anxiety about anything inhaled into my lungs but I need to cut down the amount of pseudomonas. I realize that I will always have them.

My doctor thinks gentomicin will be a bit easier on my fragile lungs than the other drugs but will still kill pseudomonas. When do you do the airway clearance? Do you nebulizer saline? I don't want to cough up the antibiotic.

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@megan123

Hi Rits..i to have pseudomonas, and use Colistin every other month..I haven’t tried your drug, but I nebulize this drug 2x a day, at app 8:30 and 5:30 pm..Toby, and Cayston are also nebulized drugs for pseudo..it’s a miracle drug for me, along with nebulized 7 percent saline x2a day, and autogenic AC once a day at PM..lots of luck😎

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Sorry. My email here seems to be messed up. I replied to a message from Megan which is almost exactly like yours Jennifer. Thanks for anyone replying and I'm so glad others are inhaling antibiotics for pseudomonas and are sharing your experiences with me.

When do you do the saline? Before Colistin? If so how much time? I probably will do the gentomicin first, wait an hour or so and then do the saline. My entire mornings and evenings are spent on treatments! So frustrating.

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@sueinmn

Oh, I think this needs to be discussed with your pulmonologist. It is important to know the formulation of the gentamicin, what other drugs you are using, and whether you also use a saline neb, as well as other details about your lungs and general health. That is beyond our capability here. Gentamicin is a relative of Arikayce (inhaled Amikacin) and Tobramicin but I would not assume that the process would be identical.
Sue

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Tks Sue. Dr McShane, currently practicing and researching in Tyler TX, is the doctor who is treating my various bacteria. She knocked MAC out of my sputum samples and now that my many pseudomonas colonies are causing problems she has prescribed gentomicin. She is a pulmonologist.

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@rits

Sorry. My email here seems to be messed up. I replied to a message from Megan which is almost exactly like yours Jennifer. Thanks for anyone replying and I'm so glad others are inhaling antibiotics for pseudomonas and are sharing your experiences with me.

When do you do the saline? Before Colistin? If so how much time? I probably will do the gentomicin first, wait an hour or so and then do the saline. My entire mornings and evenings are spent on treatments! So frustrating.

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Hi Rits..bronchodilator first..I use Albuteral..wait 10 minutes..attach Aerobika to my Aeroclipse snd nebulize 7 percent saline…then I nebulize Colistin…this is in the am app8:00-9:00 am…I start again at 5:00 starting with antigenic AC..lying in back app 20 minutes or more deep breaking, huff coughing, etc..then the regular routine..😎👍

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@megan123

Hi Rits..bronchodilator first..I use Albuteral..wait 10 minutes..attach Aerobika to my Aeroclipse snd nebulize 7 percent saline…then I nebulize Colistin…this is in the am app8:00-9:00 am…I start again at 5:00 starting with antigenic AC..lying in back app 20 minutes or more deep breaking, huff coughing, etc..then the regular routine..😎👍

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Thanks so much Jennifer. I cough up gook for a long time after nebulizing and I don't want to cough up the drug. I'm afraid if I take it too soon it will all just come back out. I'm going to start the drug tomorrow morning at around 6 and do the saline, aerobika and vest around 7. Then breakfast and then my inhalers. By the time I get the neb cups and aerobika cleaned up it will be time for lunch!

I haven't figured out yet about the evening. It's particularly hard because I'm trying not to eat for 2-3 hours before bed to prevent any silent gerd because my bronchiectasis is spreading. I eat after treatments to prevent any crumbs in my mouth being inhaled and also sometimes I gag.

Thank you so much. It's good to hear that someone else is doing the same treatment although a different drug. I just hope it gets rid of the copius amount of mucus choking me and interfering with my breathing

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@rits

Tks Sue. Dr McShane, currently practicing and researching in Tyler TX, is the doctor who is treating my various bacteria. She knocked MAC out of my sputum samples and now that my many pseudomonas colonies are causing problems she has prescribed gentomicin. She is a pulmonologist.

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You are lucky! She is excellent at dealing with bronch and associated diseases.
Sue

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@sueinmn

You are lucky! She is excellent at dealing with bronch and associated diseases.
Sue

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She is also caring, brilliant and fun. Every appointment was great even when there was bad news. She always had a plan B. I was fortunate that she was at the University of Chicago when my bronchiectasis pulmonologist found MAC in my sputum and referred me. I understand why she moved to Tyler but I miss seeing her in person.

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@rits

Tks Sue. Dr McShane, currently practicing and researching in Tyler TX, is the doctor who is treating my various bacteria. She knocked MAC out of my sputum samples and now that my many pseudomonas colonies are causing problems she has prescribed gentomicin. She is a pulmonologist.

Jump to this post

@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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@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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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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@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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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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