Tobramycin (nebulizer) for MA C?

Posted by mbmax @mbmax, May 17 4:31pm

I’m on the 3 antibiotics for MAC - Rifampin. Clarithromycin and Tobramycin? Has a one else been prescribed TOBY?

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I was just prescribed Toby from my pulmonologist but haven’t started it yet. I am concerned with the tinnitus side effects as I am already suffering with tinnitus from 18 mos. of oral drugs.

How are you managing on it?

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@mbmax & @brettdf Is the Tobramycin being prescribed to treat MAC, or do you have a Pseudomonas infection as well? Unless a sensitivity test has been performed, Tobramycin is not a recognized treatment for MAC/NTM. But it is commonly used to treat Pseudomonas that has not responded to other antibiotics.

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Profile picture for brettdf @brettdf

I was just prescribed Toby from my pulmonologist but haven’t started it yet. I am concerned with the tinnitus side effects as I am already suffering with tinnitus from 18 mos. of oral drugs.

How are you managing on it?

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@brettdf I already have tinnitus from Rifampin, haven't noticed that TOBY makes it worse.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@mbmax & @brettdf Is the Tobramycin being prescribed to treat MAC, or do you have a Pseudomonas infection as well? Unless a sensitivity test has been performed, Tobramycin is not a recognized treatment for MAC/NTM. But it is commonly used to treat Pseudomonas that has not responded to other antibiotics.

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@sueinmn Thank you Sue. I’ve been on Tobramycin for months, just got a second opinion and the new doctor told me it was not the right drug for MAC. I’m also on Clarithromycin and Rifampin. The new Dr wants me off ALL the drugs. So now I’m really confused, He says my tests are minimally abnormal and he would like to monitor my progress w/o the drugs. I’m 7 months into the 3 drug protocol (one not even being the right drug!) I want to switch drs and see what happens. Is this safe?

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Profile picture for Sue, Volunteer Mentor @sueinmn

@mbmax & @brettdf Is the Tobramycin being prescribed to treat MAC, or do you have a Pseudomonas infection as well? Unless a sensitivity test has been performed, Tobramycin is not a recognized treatment for MAC/NTM. But it is commonly used to treat Pseudomonas that has not responded to other antibiotics.

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@sueinmn
Yes, sorry ,I didn't mention that I have been testing negative for MAC now, but still positive for pseudomonas so that's what my Dr. is treating with Toby. Thanks for your response.

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Profile picture for mbmax @mbmax

@brettdf I already have tinnitus from Rifampin, haven't noticed that TOBY makes it worse.

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@mbmax
Thanks for your response. I pray that is the case for me as we are running out of antibiotic treatment options, due to side effects.

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Profile picture for mbmax @mbmax

Good luck.

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@mbmax thank you! And good luck to you, too!

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Profile picture for mbmax @mbmax

@sueinmn Thank you Sue. I’ve been on Tobramycin for months, just got a second opinion and the new doctor told me it was not the right drug for MAC. I’m also on Clarithromycin and Rifampin. The new Dr wants me off ALL the drugs. So now I’m really confused, He says my tests are minimally abnormal and he would like to monitor my progress w/o the drugs. I’m 7 months into the 3 drug protocol (one not even being the right drug!) I want to switch drs and see what happens. Is this safe?

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@mbmax Let's answer this "...I want to switch drs and see what happens. Is this safe?" first.
When I was being treated for MAC and needed a pause in treatment, the very knowledgeable infectious disease dos told me "MAC is slow to grow and slow to go, so pausing treatment is not unsafe."

Since 2019, when I stopped antibiotic treatment while intermittent cultures were still positive, the philosophy around using antibiotics has changed a lot. Many more doctors advise "watch and wait", usually in combination with daily airway clearance, often including nebulized saline.

I did "convert" to negative for MAC about 6 months after stopping antibiotics, and have remained MAC-free ever since.

Has the new doctor suggested airway clearance?

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