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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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mbmax | @mbmax | May 18 8:51pm

Thanks for the detailed response. The new Dr. suggested stopping all antibiotics. He said my tests (CT scan and Pulmonary Breath Function Test) were minimally abnormal. But to keep using the nebulizer (Ipratropium Bromide) is htat what you mean by "usually in combination with daily airway clearance, often including nebulized saline"

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irenea8 | @irenea8 | May 19 7:22am
In reply to @mbmax "@sueinmn Thank you Sue. I’ve been on Tobramycin for months, just got a second opinion and..." + (show)
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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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@mbmax
Sounds like the new Dr knows what he is doing and the previous one does not if he prescribed Toby for MAC!

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amap2025 | @amap2025 | May 19 11:03am
In reply to @brettdf "I was just prescribed Toby from my pulmonologist but haven’t started it yet. I am concerned..." + (show)
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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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@brettdf
I have no other reason to believe that Tobramycin caused tinnitus. Hoping it goes away. Well if it doesn't tinnitus is the least of my worries

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lenorj | @lenorj | May 20 10:37am

The medication, Toby, for short can definitely cause tinnitus , it was one of the side effects my Dr told me to watch for, and the reason he took me off after 2 weeks.

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mbmax | @mbmax | May 20 4:43pm
In reply to @sueinmn "@mbmax Let's answer this "...I want to switch drs and see what happens. Is this safe?"..." + (show)
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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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@sueinmn Thank you for this info. I meet with the ID Nurse tomorrow and will request clarity. Meanwhile, based on what my new Dr. said, I'm titrating off the antibiotics. And will NOT use TOBY anymore.

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