Toby and side effects

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anonymous

New member
Hi There,
my 7 year old son, Sam, has psedomonas and MRSA, he was on very strong antibiotics for 7 weeks and last week they put him on Tobramycin. Here is my question.. has anyone ever had a reaction or odd side effect to Toby? My son has been on this in the past but his time he had a reaction and may not be able to continue the treatment. What other treatments are out there for psedomonas? I understand it cannot be erradicated only suppressed., but to manage this I know we cannot ignore the fact that it is indeed causing lung tissue damage if it remains untreated.
Thanks for listening and responding!
 
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anonymous

New member
As far as meds for pseudomonas (sp), his sputum culture should state what drugs his pseudomonas reacts to. I'm thinking Cipro is a good one. Doxycycline is good for the MRSA.
I had a reaction to inhaled TOBI. It made me short of breath, but that's just me. Others have done TOBI & done wonderfully with it.
 
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anonymous

New member
Sam is on inhaled Toby, we have taken him off it for a week to monitor change. We were not given any other options for Psedomonas or MRSA, He had been on cipro and it did not supress anything?
CF is frighteneing when you see the helpless and ineffective ways to help.
 
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anonymous

New member
Pseudomonas does not respond well to oral antibiotics...therefore Cipro does not work well. Tobramyacin, whether it be inhaled or through IV...is the best to fight it.
 
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AbsintheSorrow

New member
I had bad reactions to inhaled Tobi. I don't take it anymore because whenever I did, I would start coughing because of the treatment... and then the stuff did not sit well, so often I would throw up or gag repeatedly. I do, however, do fine with the IV Tobi. Cipro doesn't usually work for me, and it tears through my intestines. But there's always new stuff. I just tried, for the first time, Meropenem through IV and that, though it made me nauseous, worked like a charm. So if they keep trying, they'll find something that should work.
 
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