Fellow Cepacians

laulau555

New member
I have b. cepacia and do inhaled tobi every other month... although i don't know how they mix it, i get it in pre-mixed viles. other inhaled i've done: ceftazadine and miropenim. although it doesn't kill the bacteria, it does help to make my lungs feel better overall. when my pft's aren't down, my doc tends to just put me on inhaled antibiotics combined with oral.
 

laulau555

New member
I have b. cepacia and do inhaled tobi every other month... although i don't know how they mix it, i get it in pre-mixed viles. other inhaled i've done: ceftazadine and miropenim. although it doesn't kill the bacteria, it does help to make my lungs feel better overall. when my pft's aren't down, my doc tends to just put me on inhaled antibiotics combined with oral.
 

laulau555

New member
I have b. cepacia and do inhaled tobi every other month... although i don't know how they mix it, i get it in pre-mixed viles. other inhaled i've done: ceftazadine and miropenim. although it doesn't kill the bacteria, it does help to make my lungs feel better overall. when my pft's aren't down, my doc tends to just put me on inhaled antibiotics combined with oral.
 

laulau555

New member
I have b. cepacia and do inhaled tobi every other month... although i don't know how they mix it, i get it in pre-mixed viles. other inhaled i've done: ceftazadine and miropenim. although it doesn't kill the bacteria, it does help to make my lungs feel better overall. when my pft's aren't down, my doc tends to just put me on inhaled antibiotics combined with oral.
 

laulau555

New member
I have b. cepacia and do inhaled tobi every other month... although i don't know how they mix it, i get it in pre-mixed viles. other inhaled i've done: ceftazadine and miropenim. although it doesn't kill the bacteria, it does help to make my lungs feel better overall. when my pft's aren't down, my doc tends to just put me on inhaled antibiotics combined with oral.
 

Diane

New member
I wanted to answer your question right after you posted it but once again i was not able to login till today. (i have no idea why this keeps happening, but its annoying) anyway.....
My Dr. wants me on something inhaled at all times ( which i really dont want to be) along with orals. Tobi being one of the regimen, and inhaled Colistin ( which i wont do) or Aztreonam (which i will do). I used to do the inhaled Tobramycin and i cannot remember the exact mixing of it since its been years, but if you dont mix enough saline into it, you will lose your voice pronto and it will be waaaaaay too harsh on your throat. If i am correct it was 4 ML. of saline but i dont remember the amount of Tobra. I will ask my nurse, i bet she will remember and i'll get back to you on that one. As for resistance and still inhaling it, i am sure i am resistant to it, but since it is going right to the source of the problem (infection in the lungs) the chances of it helping (even with resistance) is pretty good. Its def. worth a shot. I am pretty much resistane to everything they test for , yet in combo's they work. Synergism is a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 

Diane

New member
I wanted to answer your question right after you posted it but once again i was not able to login till today. (i have no idea why this keeps happening, but its annoying) anyway.....
My Dr. wants me on something inhaled at all times ( which i really dont want to be) along with orals. Tobi being one of the regimen, and inhaled Colistin ( which i wont do) or Aztreonam (which i will do). I used to do the inhaled Tobramycin and i cannot remember the exact mixing of it since its been years, but if you dont mix enough saline into it, you will lose your voice pronto and it will be waaaaaay too harsh on your throat. If i am correct it was 4 ML. of saline but i dont remember the amount of Tobra. I will ask my nurse, i bet she will remember and i'll get back to you on that one. As for resistance and still inhaling it, i am sure i am resistant to it, but since it is going right to the source of the problem (infection in the lungs) the chances of it helping (even with resistance) is pretty good. Its def. worth a shot. I am pretty much resistane to everything they test for , yet in combo's they work. Synergism is a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 

Diane

New member
I wanted to answer your question right after you posted it but once again i was not able to login till today. (i have no idea why this keeps happening, but its annoying) anyway.....
My Dr. wants me on something inhaled at all times ( which i really dont want to be) along with orals. Tobi being one of the regimen, and inhaled Colistin ( which i wont do) or Aztreonam (which i will do). I used to do the inhaled Tobramycin and i cannot remember the exact mixing of it since its been years, but if you dont mix enough saline into it, you will lose your voice pronto and it will be waaaaaay too harsh on your throat. If i am correct it was 4 ML. of saline but i dont remember the amount of Tobra. I will ask my nurse, i bet she will remember and i'll get back to you on that one. As for resistance and still inhaling it, i am sure i am resistant to it, but since it is going right to the source of the problem (infection in the lungs) the chances of it helping (even with resistance) is pretty good. Its def. worth a shot. I am pretty much resistane to everything they test for , yet in combo's they work. Synergism is a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 

Diane

New member
I wanted to answer your question right after you posted it but once again i was not able to login till today. (i have no idea why this keeps happening, but its annoying) anyway.....
My Dr. wants me on something inhaled at all times ( which i really dont want to be) along with orals. Tobi being one of the regimen, and inhaled Colistin ( which i wont do) or Aztreonam (which i will do). I used to do the inhaled Tobramycin and i cannot remember the exact mixing of it since its been years, but if you dont mix enough saline into it, you will lose your voice pronto and it will be waaaaaay too harsh on your throat. If i am correct it was 4 ML. of saline but i dont remember the amount of Tobra. I will ask my nurse, i bet she will remember and i'll get back to you on that one. As for resistance and still inhaling it, i am sure i am resistant to it, but since it is going right to the source of the problem (infection in the lungs) the chances of it helping (even with resistance) is pretty good. Its def. worth a shot. I am pretty much resistane to everything they test for , yet in combo's they work. Synergism is a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 

Diane

New member
I wanted to answer your question right after you posted it but once again i was not able to login till today. (i have no idea why this keeps happening, but its annoying) anyway.....
<br />My Dr. wants me on something inhaled at all times ( which i really dont want to be) along with orals. Tobi being one of the regimen, and inhaled Colistin ( which i wont do) or Aztreonam (which i will do). I used to do the inhaled Tobramycin and i cannot remember the exact mixing of it since its been years, but if you dont mix enough saline into it, you will lose your voice pronto and it will be waaaaaay too harsh on your throat. If i am correct it was 4 ML. of saline but i dont remember the amount of Tobra. I will ask my nurse, i bet she will remember and i'll get back to you on that one. As for resistance and still inhaling it, i am sure i am resistant to it, but since it is going right to the source of the problem (infection in the lungs) the chances of it helping (even with resistance) is pretty good. Its def. worth a shot. I am pretty much resistane to everything they test for , yet in combo's they work. Synergism is a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 
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