Tobi

[bgchastain]

I have a question about TOBI. I stopped taking TOBI a while back because I stopped cultureing psuedo and I didn't want to build a resistance to it if I didn't need it right then. Anyways, I started culturing psuedo last month and they wanted to put me back on TOBI, but when I looked at my culture chart it said there was a small trace of it detected and one of the medications it was resistant to was tobramycin! So why would they put me on TOBI? They said something like tobramycin is different than TOBI? What? Has anyone else heard this?

 

[bgchastain]

I have a question about TOBI. I stopped taking TOBI a while back because I stopped cultureing psuedo and I didn't want to build a resistance to it if I didn't need it right then. Anyways, I started culturing psuedo last month and they wanted to put me back on TOBI, but when I looked at my culture chart it said there was a small trace of it detected and one of the medications it was resistant to was tobramycin! So why would they put me on TOBI? They said something like tobramycin is different than TOBI? What? Has anyone else heard this?

 

[littledebbie]

Yah what I've been told..don't hold me to this...what I've been told is that tobramyacin is like a rain drop and tobi is a monsoon (sp?) and while pseudo can pop up an umbrella to block tonramyacin an umbrella isn't going to protect it from a monsoon.

 

[littledebbie]

Yah what I've been told..don't hold me to this...what I've been told is that tobramyacin is like a rain drop and tobi is a monsoon (sp?) and while pseudo can pop up an umbrella to block tonramyacin an umbrella isn't going to protect it from a monsoon.

 

[anonymous]

Hi Stephanie

I had my first transplant when I was 36 and recently had my second double when I was 46. I had moderate CF in my late twenties and of course in my thirties it turned severe.
I am doing well. I did well being born in an era when CF treatments were not that great but what worked for me was exercise and chest pT.

When you do well with a transplant you have a normal life and it feels awesome to breathe

Take Care
Risa

 

[anonymous]

Hi Stephanie

I had my first transplant when I was 36 and recently had my second double when I was 46. I had moderate CF in my late twenties and of course in my thirties it turned severe.
I am doing well. I did well being born in an era when CF treatments were not that great but what worked for me was exercise and chest pT.

When you do well with a transplant you have a normal life and it feels awesome to breathe

Take Care
Risa

 

[bgchastain]

Thanks Debbie for putting it in terms I could understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
I guess I should start doing TOBI now- dang it!!

 

[bgchastain]

Thanks Debbie for putting it in terms I could understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
I guess I should start doing TOBI now- dang it!!

 

[anonymous]

Bonnie- I read your post saying that there was just a trace of pseudo in your culture. That is the same for my culture. I have cultured it off and on since a year and a half ago. I have not been ill however my doctor wanted me to do Tobi and unfortunately I had bad side effects from inhaling it (gradual effects that worsen the longer I used it such as shortness of breath that escaladed to not being able to walk across a room without gasping and also I had no voice and my throat was raw also the coughing was AWFUL!!!!) Anyway, After a couple of attempts to inhale Tobi over a years time I did IV antibiotics and Tobramycin was one of them(I was scared) however I didnt have the bad side effects from using it through IV. Other than toward the end of the two week treatment I was overdosed with the IV tobramycin and has so lighted headed and dizzy that it took a few months to recover from. After the treatment course was completed my cultures were fine until about 6 mths later- they want me to use Colistin and Levequin so I guess I am wanting to be conservative and not overuse antibiotics. Do you think that pseudomonas should be treated if it shows in a culture or should one wait until any sign of low pfts or the count in the culture goes up?

 

[anonymous]

Bonnie- I read your post saying that there was just a trace of pseudo in your culture. That is the same for my culture. I have cultured it off and on since a year and a half ago. I have not been ill however my doctor wanted me to do Tobi and unfortunately I had bad side effects from inhaling it (gradual effects that worsen the longer I used it such as shortness of breath that escaladed to not being able to walk across a room without gasping and also I had no voice and my throat was raw also the coughing was AWFUL!!!!) Anyway, After a couple of attempts to inhale Tobi over a years time I did IV antibiotics and Tobramycin was one of them(I was scared) however I didnt have the bad side effects from using it through IV. Other than toward the end of the two week treatment I was overdosed with the IV tobramycin and has so lighted headed and dizzy that it took a few months to recover from. After the treatment course was completed my cultures were fine until about 6 mths later- they want me to use Colistin and Levequin so I guess I am wanting to be conservative and not overuse antibiotics. Do you think that pseudomonas should be treated if it shows in a culture or should one wait until any sign of low pfts or the count in the culture goes up?

 

[bgchastain]

Me personally, I'm going to start treating the psuedo now. I don't want to wait until I get sick from it and build up more scar tissue. I have heard that if you treat psuedo as soon as you culture it there is a better chance you can knock it down so that you don't culture it anymore- which is the best case scenario. I'm so sorry your having so much trouble with TOBI, the few times I've been on it I haven't had problems, besides a sore throat. I hope that helps.

 

[bgchastain]

Me personally, I'm going to start treating the psuedo now. I don't want to wait until I get sick from it and build up more scar tissue. I have heard that if you treat psuedo as soon as you culture it there is a better chance you can knock it down so that you don't culture it anymore- which is the best case scenario. I'm so sorry your having so much trouble with TOBI, the few times I've been on it I haven't had problems, besides a sore throat. I hope that helps.