Pseudomonas treatment

[Deb]

Couldn't begin to tell you the first time I cultured pseudomonas. But you need to attack it with everything you can and try to eradicate it now. I have been taking 750 mg of Cipro off and on for year and have also take TOBI every other month for years. Even so I never totally get rid of PA, just knock it down. I am now becoming resistant to Cipro and can no longer use TOBI due to hearing loss. Better to try to eliminate now than to let it take hold and be with you forever. Which is what I believe eventually happens to all of us.
I now have to accept that I grow PA and we only treat it when I have an exacerbation.

 

[Deb]

Couldn't begin to tell you the first time I cultured pseudomonas. But you need to attack it with everything you can and try to eradicate it now. I have been taking 750 mg of Cipro off and on for year and have also take TOBI every other month for years. Even so I never totally get rid of PA, just knock it down. I am now becoming resistant to Cipro and can no longer use TOBI due to hearing loss. Better to try to eliminate now than to let it take hold and be with you forever. Which is what I believe eventually happens to all of us.
I now have to accept that I grow PA and we only treat it when I have an exacerbation.

 

[franzie2984]

Thanks for all the input and good advice! I started doing the Tobi and Cipro. I think ill try to do the massive dose (2250mg per day!!) that my Dr. prescribed. I asked her to explain and she said it is well established that CFers metabolize antibiotics faster than other people so a larger dose is sometimes good because we will likely have less in our system at any given time. Also she claimed that 750 three times a day is now considered the standard for the CF community forPseudomonas(I am going to look research on both of these claims). I do go to a very reputable CF clinic though.<br>After seeing that many people have problems withPseudomonascoming back and knowing how harmful it can be, I decided to just try to hit the pseudomonas with everything and basically try to eradicate it with sheer volume of medication<img src="i/expressions/face-icon-small-smile.gif" border="0">, and also exercise/breathing treatments to bring everything up etc... I'll later post how well 2250 mg of Cipro was tolerated and if this regimen helpederadicateit (since this may be of use to others in the future).<br>Does Cayston also cause hearing loss? I am curious because I already have hearing loss and Tobi long term is probably not good for me. Also more input on your own experiences with Pseudomonas is still welcome!<br>Sarah~

 

[franzie2984]

Thanks for all the input and good advice! I started doing the Tobi and Cipro. I think ill try to do the massive dose (2250mg per day!!) that my Dr. prescribed. I asked her to explain and she said it is well established that CFers metabolize antibiotics faster than other people so a larger dose is sometimes good because we will likely have less in our system at any given time. Also she claimed that 750 three times a day is now considered the standard for the CF community forPseudomonas(I am going to look research on both of these claims). I do go to a very reputable CF clinic though.<br>After seeing that many people have problems withPseudomonascoming back and knowing how harmful it can be, I decided to just try to hit the pseudomonas with everything and basically try to eradicate it with sheer volume of medication<img src="i/expressions/face-icon-small-smile.gif" border="0">, and also exercise/breathing treatments to bring everything up etc... I'll later post how well 2250 mg of Cipro was tolerated and if this regimen helpederadicateit (since this may be of use to others in the future).<br>Does Cayston also cause hearing loss? I am curious because I already have hearing loss and Tobi long term is probably not good for me. Also more input on your own experiences with Pseudomonas is still welcome!<br>Sarah~

 

[franzie2984]

Thanks for all the input and good advice! I started doing the Tobi and Cipro. I think ill try to do the massive dose (2250mg per day!!) that my Dr. prescribed. I asked her to explain and she said it is well established that CFers metabolize antibiotics faster than other people so a larger dose is sometimes good because we will likely have less in our system at any given time. Also she claimed that 750 three times a day is now considered the standard for the CF community forPseudomonas(I am going to look research on both of these claims). I do go to a very reputable CF clinic though.<br>After seeing that many people have problems withPseudomonascoming back and knowing how harmful it can be, I decided to just try to hit the pseudomonas with everything and basically try to eradicate it with sheer volume of medication<img src="i/expressions/face-icon-small-smile.gif" border="0">, and also exercise/breathing treatments to bring everything up etc... I'll later post how well 2250 mg of Cipro was tolerated and if this regimen helpederadicateit (since this may be of use to others in the future).<br>Does Cayston also cause hearing loss? I am curious because I already have hearing loss and Tobi long term is probably not good for me. Also more input on your own experiences with Pseudomonas is still welcome!<br>Sarah~

 

[Deb]

The 750mg does bother my stomach sometimes so make sure you eat something with it.

I have encountered different opinions as to the toxicity of TOBI. I am told that my hearing loss is due to IV Tobramycin. Some say that TOBI will not adversely affect my hearing further and others say that it definitely will only at a slower pace than IV. Since I have profound hearing loss in one ear and also some loss in the other ear I now avoid IV and TOBI. I'm told if I absolutely need TOBI in the future I could try once a day instead of twice.

I now use Cayston and I do not believe it has audio toxicity.

Exercise and keeping your lungs clear is crucial. Good luck to you.

 

[Deb]

The 750mg does bother my stomach sometimes so make sure you eat something with it.

I have encountered different opinions as to the toxicity of TOBI. I am told that my hearing loss is due to IV Tobramycin. Some say that TOBI will not adversely affect my hearing further and others say that it definitely will only at a slower pace than IV. Since I have profound hearing loss in one ear and also some loss in the other ear I now avoid IV and TOBI. I'm told if I absolutely need TOBI in the future I could try once a day instead of twice.

I now use Cayston and I do not believe it has audio toxicity.

Exercise and keeping your lungs clear is crucial. Good luck to you.

 

[Deb]

The 750mg does bother my stomach sometimes so make sure you eat something with it.

I have encountered different opinions as to the toxicity of TOBI. I am told that my hearing loss is due to IV Tobramycin. Some say that TOBI will not adversely affect my hearing further and others say that it definitely will only at a slower pace than IV. Since I have profound hearing loss in one ear and also some loss in the other ear I now avoid IV and TOBI. I'm told if I absolutely need TOBI in the future I could try once a day instead of twice.

I now use Cayston and I do not believe it has audio toxicity.

Exercise and keeping your lungs clear is crucial. Good luck to you.