TOBI side effects?

Hermit

New member
I can't do TOBI myself either. I get too sick. It's awful! I cough up blood and lost my voice and get yeast infections in my mouth.
not to mention the taste is horrible.
 

Hermit

New member
I can't do TOBI myself either. I get too sick. It's awful! I cough up blood and lost my voice and get yeast infections in my mouth.
not to mention the taste is horrible.
 

Hermit

New member
I can't do TOBI myself either. I get too sick. It's awful! I cough up blood and lost my voice and get yeast infections in my mouth.
not to mention the taste is horrible.
 

Hermit

New member
I can't do TOBI myself either. I get too sick. It's awful! I cough up blood and lost my voice and get yeast infections in my mouth.
not to mention the taste is horrible.
 

Hermit

New member
I can't do TOBI myself either. I get too sick. It's awful! I cough up blood and lost my voice and get yeast infections in my mouth.
<br />not to mention the taste is horrible.
 
C

CFinCalifornia

Guest
Thanks for all the responses! Just finished Tobi yesterday and good to hear I'm not crazy and some of these side effects are probably real.

Hermit: a tip I got from this forum and confirmed by a couple doctors is to suck on Mycelex troches a few times a day during Tobi. I tried it for the first time this month and for the first time EVER, didn't lose my voice, didn't get a yeast infection on my tongue and stopped coughing up blood. AMAZING STUFF. I'd highly recommend trying it again with the Mycelex, if you and your doctors think Tobi would work for you. Sidenote: none of my CF docs ever recommended the Mycelex -- it was my internist and allergist/pulmonologist. I don't know if/why this hasn't reached the CF establishment yet, but it seems to still be on the periphery somehow...

Best of luck to you all.
 
C

CFinCalifornia

Guest
Thanks for all the responses! Just finished Tobi yesterday and good to hear I'm not crazy and some of these side effects are probably real.

Hermit: a tip I got from this forum and confirmed by a couple doctors is to suck on Mycelex troches a few times a day during Tobi. I tried it for the first time this month and for the first time EVER, didn't lose my voice, didn't get a yeast infection on my tongue and stopped coughing up blood. AMAZING STUFF. I'd highly recommend trying it again with the Mycelex, if you and your doctors think Tobi would work for you. Sidenote: none of my CF docs ever recommended the Mycelex -- it was my internist and allergist/pulmonologist. I don't know if/why this hasn't reached the CF establishment yet, but it seems to still be on the periphery somehow...

Best of luck to you all.
 
C

CFinCalifornia

Guest
Thanks for all the responses! Just finished Tobi yesterday and good to hear I'm not crazy and some of these side effects are probably real.

Hermit: a tip I got from this forum and confirmed by a couple doctors is to suck on Mycelex troches a few times a day during Tobi. I tried it for the first time this month and for the first time EVER, didn't lose my voice, didn't get a yeast infection on my tongue and stopped coughing up blood. AMAZING STUFF. I'd highly recommend trying it again with the Mycelex, if you and your doctors think Tobi would work for you. Sidenote: none of my CF docs ever recommended the Mycelex -- it was my internist and allergist/pulmonologist. I don't know if/why this hasn't reached the CF establishment yet, but it seems to still be on the periphery somehow...

Best of luck to you all.
 
C

CFinCalifornia

Guest
Thanks for all the responses! Just finished Tobi yesterday and good to hear I'm not crazy and some of these side effects are probably real.

Hermit: a tip I got from this forum and confirmed by a couple doctors is to suck on Mycelex troches a few times a day during Tobi. I tried it for the first time this month and for the first time EVER, didn't lose my voice, didn't get a yeast infection on my tongue and stopped coughing up blood. AMAZING STUFF. I'd highly recommend trying it again with the Mycelex, if you and your doctors think Tobi would work for you. Sidenote: none of my CF docs ever recommended the Mycelex -- it was my internist and allergist/pulmonologist. I don't know if/why this hasn't reached the CF establishment yet, but it seems to still be on the periphery somehow...

Best of luck to you all.
 
C

CFinCalifornia

Guest
Thanks for all the responses! Just finished Tobi yesterday and good to hear I'm not crazy and some of these side effects are probably real.
<br />
<br />Hermit: a tip I got from this forum and confirmed by a couple doctors is to suck on Mycelex troches a few times a day during Tobi. I tried it for the first time this month and for the first time EVER, didn't lose my voice, didn't get a yeast infection on my tongue and stopped coughing up blood. AMAZING STUFF. I'd highly recommend trying it again with the Mycelex, if you and your doctors think Tobi would work for you. Sidenote: none of my CF docs ever recommended the Mycelex -- it was my internist and allergist/pulmonologist. I don't know if/why this hasn't reached the CF establishment yet, but it seems to still be on the periphery somehow...
<br />
<br />Best of luck to you all.
 

sweetie

New member
Just an FYI Tobi and/or Tobramycin can also cause permanent balance issues--(bi-lateral vestibular damage) and trust me I have it and it SUCKS! It is like being off balance all the time, especially with stimulus (e.g. in a busy store)

It has slightly improved, but will never be 100% again. And it is without warning---all my labs were fine, even my hearing test was perfect.......just an FYI, I wish I had known that this was a side effect.

It usually is a result of IV Tobramycin, but it removes you from ever taking Aminoglycosides again (TOBI, Tobramycin, Gentamycin, etc.)
cindy
 

sweetie

New member
Just an FYI Tobi and/or Tobramycin can also cause permanent balance issues--(bi-lateral vestibular damage) and trust me I have it and it SUCKS! It is like being off balance all the time, especially with stimulus (e.g. in a busy store)

It has slightly improved, but will never be 100% again. And it is without warning---all my labs were fine, even my hearing test was perfect.......just an FYI, I wish I had known that this was a side effect.

It usually is a result of IV Tobramycin, but it removes you from ever taking Aminoglycosides again (TOBI, Tobramycin, Gentamycin, etc.)
cindy
 

sweetie

New member
Just an FYI Tobi and/or Tobramycin can also cause permanent balance issues--(bi-lateral vestibular damage) and trust me I have it and it SUCKS! It is like being off balance all the time, especially with stimulus (e.g. in a busy store)

It has slightly improved, but will never be 100% again. And it is without warning---all my labs were fine, even my hearing test was perfect.......just an FYI, I wish I had known that this was a side effect.

It usually is a result of IV Tobramycin, but it removes you from ever taking Aminoglycosides again (TOBI, Tobramycin, Gentamycin, etc.)
cindy
 

sweetie

New member
Just an FYI Tobi and/or Tobramycin can also cause permanent balance issues--(bi-lateral vestibular damage) and trust me I have it and it SUCKS! It is like being off balance all the time, especially with stimulus (e.g. in a busy store)

It has slightly improved, but will never be 100% again. And it is without warning---all my labs were fine, even my hearing test was perfect.......just an FYI, I wish I had known that this was a side effect.

It usually is a result of IV Tobramycin, but it removes you from ever taking Aminoglycosides again (TOBI, Tobramycin, Gentamycin, etc.)
cindy
 

sweetie

New member
Just an FYI Tobi and/or Tobramycin can also cause permanent balance issues--(bi-lateral vestibular damage) and trust me I have it and it SUCKS! It is like being off balance all the time, especially with stimulus (e.g. in a busy store)
<br />
<br />It has slightly improved, but will never be 100% again. And it is without warning---all my labs were fine, even my hearing test was perfect.......just an FYI, I wish I had known that this was a side effect.
<br />
<br />It usually is a result of IV Tobramycin, but it removes you from ever taking Aminoglycosides again (TOBI, Tobramycin, Gentamycin, etc.)
<br />cindy
 
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