Has anyone done tobi neb. just once daily

D

Deb

Guest
I have profound hearing loss in my left ear from years of IV tobramycin. Despite some people telling me that it is still OK to use TOBI, other docs have said it will still continue to affect my hearing. They suggested that I stop TOBI or use it only once a day instead of twice. For now I have totally stopped but if I need it again will try just once a day.
 
S

stephen

Guest
Deb,
I saw in your post that IV tobramycin has affected your hearing. It caused hearing problems with me too - after only three two week treatments over two years. TOBI was also affecting my hearing - Ringing and high frequency loss.

For the last four years I've been using Cayston instead. No problems - and it has been extremely effective for me. You might want to try it.

As another alternative, my doctor had recommended using only a half dose of the TOBI twice a day, but the Cayston has been working fine, thank G-d.

Best wishes,
Stephen, 69 years old
 
S

stephen

Guest
Deb,
I saw in your post that IV tobramycin has affected your hearing. It caused hearing problems with me too - after only three two week treatments over two years. TOBI was also affecting my hearing - Ringing and high frequency loss.

For the last four years I've been using Cayston instead. No problems - and it has been extremely effective for me. You might want to try it.

As another alternative, my doctor had recommended using only a half dose of the TOBI twice a day, but the Cayston has been working fine, thank G-d.

Best wishes,
Stephen, 69 years old
 
S

stephen

Guest
Deb,
<br />I saw in your post that IV tobramycin has affected your hearing. It caused hearing problems with me too - after only three two week treatments over two years. TOBI was also affecting my hearing - Ringing and high frequency loss.
<br />
<br />For the last four years I've been using Cayston instead. No problems - and it has been extremely effective for me. You might want to try it.
<br />
<br />As another alternative, my doctor had recommended using only a half dose of the TOBI twice a day, but the Cayston has been working fine, thank G-d.
<br />
<br />Best wishes,
<br />Stephen, 69 years old
<br />
 
N

nhaggard07

New member
I have been taking tobi once daily for about 4 months. I don't notice a difference really but I also have not been sick really since. The one thing I can tell you first hand about tobi is that it tastes TERRIBLE! and you should also rinse your nebulizer after every use of tobi because the medicine is really sticky and when it dries it will clog up your neb. I have thrown away a few nebs because I didn't rinse them after use and the med dried up and clogged it. I would definitely give tobi a try because it can't hurt it can only help I suppose. But take my advice, it does taste nasty, and you def need to rinse your neb after every use! Good luck and god bless.
 
N

nhaggard07

New member
I have been taking tobi once daily for about 4 months. I don't notice a difference really but I also have not been sick really since. The one thing I can tell you first hand about tobi is that it tastes TERRIBLE! and you should also rinse your nebulizer after every use of tobi because the medicine is really sticky and when it dries it will clog up your neb. I have thrown away a few nebs because I didn't rinse them after use and the med dried up and clogged it. I would definitely give tobi a try because it can't hurt it can only help I suppose. But take my advice, it does taste nasty, and you def need to rinse your neb after every use! Good luck and god bless.
 
N

nhaggard07

New member
I have been taking tobi once daily for about 4 months. I don't notice a difference really but I also have not been sick really since. The one thing I can tell you first hand about tobi is that it tastes TERRIBLE! and you should also rinse your nebulizer after every use of tobi because the medicine is really sticky and when it dries it will clog up your neb. I have thrown away a few nebs because I didn't rinse them after use and the med dried up and clogged it. I would definitely give tobi a try because it can't hurt it can only help I suppose. But take my advice, it does taste nasty, and you def need to rinse your neb after every use! Good luck and god bless.
 
A

azdesertrat

New member
I've used Tobi quite a bit & after reading other posts I now know why my ears ring constantly!
I have used it once a day for an outbreak of pseudomonas. It didn't work that great.
The reason I did it only once a day for a time was because I didn't have enough to do it as prescribed.
I've never been told by a DR to do it once a day.
Now that I know it can cause hearing loss I think I'll be alot more selective as to when I do it.
That is to say, I won't do it for a minor pseudo outbreak.
Thanks for sharing the experiences everyone, I really appreciate you all & this site!
 
A

azdesertrat

New member
I've used Tobi quite a bit & after reading other posts I now know why my ears ring constantly!
I have used it once a day for an outbreak of pseudomonas. It didn't work that great.
The reason I did it only once a day for a time was because I didn't have enough to do it as prescribed.
I've never been told by a DR to do it once a day.
Now that I know it can cause hearing loss I think I'll be alot more selective as to when I do it.
That is to say, I won't do it for a minor pseudo outbreak.
Thanks for sharing the experiences everyone, I really appreciate you all & this site!
 
A

azdesertrat

New member
I've used Tobi quite a bit & after reading other posts I now know why my ears ring constantly!
<br />I have used it once a day for an outbreak of pseudomonas. It didn't work that great.
<br />The reason I did it only once a day for a time was because I didn't have enough to do it as prescribed.
<br />I've never been told by a DR to do it once a day.
<br />Now that I know it can cause hearing loss I think I'll be alot more selective as to when I do it.
<br />That is to say, I won't do it for a minor pseudo outbreak.
<br />Thanks for sharing the experiences everyone, I really appreciate you all & this site!
 
L

lizlas

Guest
<P>Incomudrox:</P>
<P>how long have you been inhaling for ceftazadime for....?</P>
<P> </P>
<P>I started it on Iv last month, but then got itchy hives, so had to stop and going for allergy testing on it Nov. 1.</P>
<P>my clinic is just starting to use it for inhaltion and id like to try it that way. </P>
<P>and you find it works better than Tobi.  do you use it for PA?...and how many mls do you dilute in # of mls of .09 saline?</P>
<P>thanks liz</P>
<P> </P>
<P>and yes Ive inhaled 1/2 tube tobi in morn and 1/2 at nite....300 mg a day....</P>
<P>vial morn and nite was too irritating and ...i actually prefer just plain tobramycin over tobi</P>
<P> </P>
<P> </P>
 
L

lizlas

Guest
<P>Incomudrox:</P>
<P>how long have you been inhaling for ceftazadime for....?</P>
<P></P>
<P>I started it on Iv last month, but then got itchy hives, so had to stop and going for allergy testing on it Nov. 1.</P>
<P>my clinic is just starting to use it for inhaltion and id like to try it that way. </P>
<P>and you find it works better than Tobi. do you use it for PA?...and how many mls do you dilute in # of mls of.09 saline?</P>
<P>thanks liz</P>
<P></P>
<P>and yes Ive inhaled 1/2 tube tobi in morn and 1/2 at nite....300 mg a day....</P>
<P>vial morn and nite was too irritating and ...i actually prefer just plain tobramycin over tobi</P>
<P></P>
<P></P>
 
L

lizlas

Guest
<P><BR>Incomudrox:</P>
<P>how long have you been inhaling for ceftazadime for....?</P>
<P></P>
<P>I started it on Iv last month, but then got itchy hives, so had to stop and going for allergy testing on it Nov. 1.</P>
<P>my clinic is just starting to use it for inhaltion and id like to try it that way. </P>
<P>and you find it works better than Tobi. do you use it for PA?...and how many mls do you dilute in # of mls of.09 saline?</P>
<P>thanks liz</P>
<P></P>
<P>and yes Ive inhaled 1/2 tube tobi in morn and 1/2 at nite....300 mg a day....</P>
<P>vial morn and nite was too irritating and ...i actually prefer just plain tobramycin over tobi</P>
<P></P>
<P></P>
 
M

Mallymookcf

New member
thank you for all of your replies! i used to have bad broncho spasms while using  tobi, so this go around when i grew the psuedomonus, i wanted to use all of my options including tobi, but i thought by doing only once daily it would cut down on the broncho spasm side effects, but then i started thinking it may cause the psuedomonus to become resistant if once a day is not strong enough?? so then i started worrying.  should i start it back to two times a day if i only have a week left before my cayston month... just thinkin out loud..i know i need to ask my doc tom. but thought until then i would get ur inputs. thanks again! God Bless!
 
M

Mallymookcf

New member
thank you for all of your replies! i used to have bad broncho spasmswhile using tobi, so this go around when i grew the psuedomonus, i wanted to use all of my options including tobi, but i thought by doing only once dailyit would cut down on the broncho spasm side effects, but then i started thinking it may causethe psuedomonus to become resistant if once a day is not strong enough?? so then i started worrying. should i start it back to two times a day if i only have a week left before mycayston month... just thinkin out loud..i know i need to ask my doc tom. but thought until then i would get ur inputs. thanks again! God Bless!
 
M

Mallymookcf

New member
<BR>thank you for all of your replies! i used to have bad broncho spasmswhile using tobi, so this go around when i grew the psuedomonus, i wanted to use all of my options including tobi, but i thought by doing only once dailyit would cut down on the broncho spasm side effects, but then i started thinking it may causethe psuedomonus to become resistant if once a day is not strong enough?? so then i started worrying. should i start it back to two times a day if i only have a week left before mycayston month... just thinkin out loud..i know i need to ask my doc tom. but thought until then i would get ur inputs. thanks again! God Bless!
 
M

Mallymookcf

New member
<P>to <A href="http://www.cysticfibrosis.com/profile/index.cfm/Incomudrox"><U><FONT color=#666666>Incomudrox</FONT></U></A>'s first reply, </P>
<P>that is what this site is for, right? asking questions... <img src="i/expressions/face-icon-small-smile.gif" border="0"> afterall, us "c.f.-ers"  are the only one's that know first hand. <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
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