Fellow Cepacians

K

KrazyKat

New member
I've been considering suggesting to my doc for some time now, that instead of constantly giving me oral AB's (which seldom work) or yet another round of IVs, that we talk about the possibility of either regular inhaled AB's or just a course of inhaled AB's the next time i get sick. Now typically, over here, this 'isn't what they normally do', but then over here is a very one size fits all approach to treatment and i basically manage my own health as much as i can, so the upshot is, they know nothing about how inhaled AB's should be administered, so i have the following questions for those of you with Tobra resistent Cepacia (and anybody else who happens to know!!)

1) is it ok or even advisable for somebody with Tobra resistant cepacia to inahle Tobra? (we don't have Tobi over here, only the IV solution)

2) if you do inhale Tobra/Tobi, do you only do so when you are having an exacerbation, or do you do it twice a day, month on and month off?

3) what difference, if any, has it made to your health?

4) do any of you inhale any other AB's to specifically target the cepacia and if so, how often do you do it and in what amounts?

5) my CF nurse recently told me that 'over here', we don't dilute the IV Tobra at all for inhalation, we just inhale it straight!! Sounds pretty harsh to me, i think it would normally be diluted with saline - how do you guys do it? How much Tobra to how much sterile saline?
 
K

KrazyKat

New member
I've been considering suggesting to my doc for some time now, that instead of constantly giving me oral AB's (which seldom work) or yet another round of IVs, that we talk about the possibility of either regular inhaled AB's or just a course of inhaled AB's the next time i get sick. Now typically, over here, this 'isn't what they normally do', but then over here is a very one size fits all approach to treatment and i basically manage my own health as much as i can, so the upshot is, they know nothing about how inhaled AB's should be administered, so i have the following questions for those of you with Tobra resistent Cepacia (and anybody else who happens to know!!)

1) is it ok or even advisable for somebody with Tobra resistant cepacia to inahle Tobra? (we don't have Tobi over here, only the IV solution)

2) if you do inhale Tobra/Tobi, do you only do so when you are having an exacerbation, or do you do it twice a day, month on and month off?

3) what difference, if any, has it made to your health?

4) do any of you inhale any other AB's to specifically target the cepacia and if so, how often do you do it and in what amounts?

5) my CF nurse recently told me that 'over here', we don't dilute the IV Tobra at all for inhalation, we just inhale it straight!! Sounds pretty harsh to me, i think it would normally be diluted with saline - how do you guys do it? How much Tobra to how much sterile saline?
 
K

KrazyKat

New member
I've been considering suggesting to my doc for some time now, that instead of constantly giving me oral AB's (which seldom work) or yet another round of IVs, that we talk about the possibility of either regular inhaled AB's or just a course of inhaled AB's the next time i get sick. Now typically, over here, this 'isn't what they normally do', but then over here is a very one size fits all approach to treatment and i basically manage my own health as much as i can, so the upshot is, they know nothing about how inhaled AB's should be administered, so i have the following questions for those of you with Tobra resistent Cepacia (and anybody else who happens to know!!)

1) is it ok or even advisable for somebody with Tobra resistant cepacia to inahle Tobra? (we don't have Tobi over here, only the IV solution)

2) if you do inhale Tobra/Tobi, do you only do so when you are having an exacerbation, or do you do it twice a day, month on and month off?

3) what difference, if any, has it made to your health?

4) do any of you inhale any other AB's to specifically target the cepacia and if so, how often do you do it and in what amounts?

5) my CF nurse recently told me that 'over here', we don't dilute the IV Tobra at all for inhalation, we just inhale it straight!! Sounds pretty harsh to me, i think it would normally be diluted with saline - how do you guys do it? How much Tobra to how much sterile saline?
 
K

KrazyKat

New member
I've been considering suggesting to my doc for some time now, that instead of constantly giving me oral AB's (which seldom work) or yet another round of IVs, that we talk about the possibility of either regular inhaled AB's or just a course of inhaled AB's the next time i get sick. Now typically, over here, this 'isn't what they normally do', but then over here is a very one size fits all approach to treatment and i basically manage my own health as much as i can, so the upshot is, they know nothing about how inhaled AB's should be administered, so i have the following questions for those of you with Tobra resistent Cepacia (and anybody else who happens to know!!)

1) is it ok or even advisable for somebody with Tobra resistant cepacia to inahle Tobra? (we don't have Tobi over here, only the IV solution)

2) if you do inhale Tobra/Tobi, do you only do so when you are having an exacerbation, or do you do it twice a day, month on and month off?

3) what difference, if any, has it made to your health?

4) do any of you inhale any other AB's to specifically target the cepacia and if so, how often do you do it and in what amounts?

5) my CF nurse recently told me that 'over here', we don't dilute the IV Tobra at all for inhalation, we just inhale it straight!! Sounds pretty harsh to me, i think it would normally be diluted with saline - how do you guys do it? How much Tobra to how much sterile saline?
 
K

KrazyKat

New member
I've been considering suggesting to my doc for some time now, that instead of constantly giving me oral AB's (which seldom work) or yet another round of IVs, that we talk about the possibility of either regular inhaled AB's or just a course of inhaled AB's the next time i get sick. Now typically, over here, this 'isn't what they normally do', but then over here is a very one size fits all approach to treatment and i basically manage my own health as much as i can, so the upshot is, they know nothing about how inhaled AB's should be administered, so i have the following questions for those of you with Tobra resistent Cepacia (and anybody else who happens to know!!)
<br />
<br />1) is it ok or even advisable for somebody with Tobra resistant cepacia to inahle Tobra? (we don't have Tobi over here, only the IV solution)
<br />
<br />2) if you do inhale Tobra/Tobi, do you only do so when you are having an exacerbation, or do you do it twice a day, month on and month off?
<br />
<br />3) what difference, if any, has it made to your health?
<br />
<br />4) do any of you inhale any other AB's to specifically target the cepacia and if so, how often do you do it and in what amounts?
<br />
<br />5) my CF nurse recently told me that 'over here', we don't dilute the IV Tobra at all for inhalation, we just inhale it straight!! Sounds pretty harsh to me, i think it would normally be diluted with saline - how do you guys do it? How much Tobra to how much sterile saline?
 
S

Skye

New member
I won't attempt to tell you how to mix Tobra since I have never done it. I will say it does sound a bit harsh to not mix it down. I AM resistant to Tobra....though I don't have Cepacia...and I still have used Tobi. The benefit to inhaled is a MUCH higher concentration than IV form that goes right to the source. So even if you are resistant, you may still get some benefit because of the higher concentration. I do believe that a lot of older CFers including those with Cepacia cycle an inhaled abx regularly....4 weeks on and 4 weeks off. Some even use an inhaled abx all the time such as a cycle of Tobi followed by a cycle of Collistin. They cycle them to keep you from becoming more resistant. Hope this helps and I hope you get some more responses.
 
S

Skye

New member
I won't attempt to tell you how to mix Tobra since I have never done it. I will say it does sound a bit harsh to not mix it down. I AM resistant to Tobra....though I don't have Cepacia...and I still have used Tobi. The benefit to inhaled is a MUCH higher concentration than IV form that goes right to the source. So even if you are resistant, you may still get some benefit because of the higher concentration. I do believe that a lot of older CFers including those with Cepacia cycle an inhaled abx regularly....4 weeks on and 4 weeks off. Some even use an inhaled abx all the time such as a cycle of Tobi followed by a cycle of Collistin. They cycle them to keep you from becoming more resistant. Hope this helps and I hope you get some more responses.
 
S

Skye

New member
I won't attempt to tell you how to mix Tobra since I have never done it. I will say it does sound a bit harsh to not mix it down. I AM resistant to Tobra....though I don't have Cepacia...and I still have used Tobi. The benefit to inhaled is a MUCH higher concentration than IV form that goes right to the source. So even if you are resistant, you may still get some benefit because of the higher concentration. I do believe that a lot of older CFers including those with Cepacia cycle an inhaled abx regularly....4 weeks on and 4 weeks off. Some even use an inhaled abx all the time such as a cycle of Tobi followed by a cycle of Collistin. They cycle them to keep you from becoming more resistant. Hope this helps and I hope you get some more responses.
 
S

Skye

New member
I won't attempt to tell you how to mix Tobra since I have never done it. I will say it does sound a bit harsh to not mix it down. I AM resistant to Tobra....though I don't have Cepacia...and I still have used Tobi. The benefit to inhaled is a MUCH higher concentration than IV form that goes right to the source. So even if you are resistant, you may still get some benefit because of the higher concentration. I do believe that a lot of older CFers including those with Cepacia cycle an inhaled abx regularly....4 weeks on and 4 weeks off. Some even use an inhaled abx all the time such as a cycle of Tobi followed by a cycle of Collistin. They cycle them to keep you from becoming more resistant. Hope this helps and I hope you get some more responses.
 
S

Skye

New member
I won't attempt to tell you how to mix Tobra since I have never done it. I will say it does sound a bit harsh to not mix it down. I AM resistant to Tobra....though I don't have Cepacia...and I still have used Tobi. The benefit to inhaled is a MUCH higher concentration than IV form that goes right to the source. So even if you are resistant, you may still get some benefit because of the higher concentration. I do believe that a lot of older CFers including those with Cepacia cycle an inhaled abx regularly....4 weeks on and 4 weeks off. Some even use an inhaled abx all the time such as a cycle of Tobi followed by a cycle of Collistin. They cycle them to keep you from becoming more resistant. Hope this helps and I hope you get some more responses.
 
T

tammykrumrey

Guest
My 10 year old daughter's cepacia is resistant to Tobra (she also has B. Multivorans). But when she cultured it for the first time two months ago, she was put on inhaled Tobi and oral Cipro and Bactrim. The combination of the three really helped knock down her cough and the amount of mucus she was coughing up.

Her dr. did not put her on a Tobi 'schedule'. It's just during an exacerbation. My nephew (with CF also and B. Multivorans) is not on a Tobi 'schedule' either and he has cultured it for 7 years now.

Not sure about the rest of your questions. I could not recommend at all anything regarding the dilution, or rather lack of dilution, of Tobra.
 
T

tammykrumrey

Guest
My 10 year old daughter's cepacia is resistant to Tobra (she also has B. Multivorans). But when she cultured it for the first time two months ago, she was put on inhaled Tobi and oral Cipro and Bactrim. The combination of the three really helped knock down her cough and the amount of mucus she was coughing up.

Her dr. did not put her on a Tobi 'schedule'. It's just during an exacerbation. My nephew (with CF also and B. Multivorans) is not on a Tobi 'schedule' either and he has cultured it for 7 years now.

Not sure about the rest of your questions. I could not recommend at all anything regarding the dilution, or rather lack of dilution, of Tobra.
 
T

tammykrumrey

Guest
My 10 year old daughter's cepacia is resistant to Tobra (she also has B. Multivorans). But when she cultured it for the first time two months ago, she was put on inhaled Tobi and oral Cipro and Bactrim. The combination of the three really helped knock down her cough and the amount of mucus she was coughing up.

Her dr. did not put her on a Tobi 'schedule'. It's just during an exacerbation. My nephew (with CF also and B. Multivorans) is not on a Tobi 'schedule' either and he has cultured it for 7 years now.

Not sure about the rest of your questions. I could not recommend at all anything regarding the dilution, or rather lack of dilution, of Tobra.
 
T

tammykrumrey

Guest
My 10 year old daughter's cepacia is resistant to Tobra (she also has B. Multivorans). But when she cultured it for the first time two months ago, she was put on inhaled Tobi and oral Cipro and Bactrim. The combination of the three really helped knock down her cough and the amount of mucus she was coughing up.

Her dr. did not put her on a Tobi 'schedule'. It's just during an exacerbation. My nephew (with CF also and B. Multivorans) is not on a Tobi 'schedule' either and he has cultured it for 7 years now.

Not sure about the rest of your questions. I could not recommend at all anything regarding the dilution, or rather lack of dilution, of Tobra.
 
T

tammykrumrey

Guest
My 10 year old daughter's cepacia is resistant to Tobra (she also has B. Multivorans). But when she cultured it for the first time two months ago, she was put on inhaled Tobi and oral Cipro and Bactrim. The combination of the three really helped knock down her cough and the amount of mucus she was coughing up.
<br />
<br />Her dr. did not put her on a Tobi 'schedule'. It's just during an exacerbation. My nephew (with CF also and B. Multivorans) is not on a Tobi 'schedule' either and he has cultured it for 7 years now.
<br />
<br />Not sure about the rest of your questions. I could not recommend at all anything regarding the dilution, or rather lack of dilution, of Tobra.
<br />
 
J

just1more

New member
I can't tell you exactly how to compound/mix it but TOBI is 300mg of Tobramycin in 5ml of saline.

It looks like in the US Tobramycin is supplied 40mg/ml so it is actually a bit weaker than TOBI (surprised me).
 
J

just1more

New member
I can't tell you exactly how to compound/mix it but TOBI is 300mg of Tobramycin in 5ml of saline.

It looks like in the US Tobramycin is supplied 40mg/ml so it is actually a bit weaker than TOBI (surprised me).
 
J

just1more

New member
I can't tell you exactly how to compound/mix it but TOBI is 300mg of Tobramycin in 5ml of saline.

It looks like in the US Tobramycin is supplied 40mg/ml so it is actually a bit weaker than TOBI (surprised me).
 
J

just1more

New member
I can't tell you exactly how to compound/mix it but TOBI is 300mg of Tobramycin in 5ml of saline.

It looks like in the US Tobramycin is supplied 40mg/ml so it is actually a bit weaker than TOBI (surprised me).
 
J

just1more

New member
I can't tell you exactly how to compound/mix it but TOBI is 300mg of Tobramycin in 5ml of saline.
<br />
<br />It looks like in the US Tobramycin is supplied 40mg/ml so it is actually a bit weaker than TOBI (surprised me).
 
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