Coly-mycin (Colistin)

P

Playswithpixels

New member
I switch from Tobi to Coly-mycin every other month. When I do Tobi I feel pretty good after a treatment. When I do the Colistin, I end up feeling tight and like I can't breath in deep enough. I dread it when it is time to switch from Tobi. My CF doctor's answer was to go without an antibiotic when I am off of Tobi. I am too nervous to try this. Coly-mycin didn't used to do this, and I was on it for years. Only when I went back on Tobi (went off for about 6 years) did this problem start. Does anyone else have this problem?


Andrea 32 w/CF
 
P

Playswithpixels

New member
I switch from Tobi to Coly-mycin every other month. When I do Tobi I feel pretty good after a treatment. When I do the Colistin, I end up feeling tight and like I can't breath in deep enough. I dread it when it is time to switch from Tobi. My CF doctor's answer was to go without an antibiotic when I am off of Tobi. I am too nervous to try this. Coly-mycin didn't used to do this, and I was on it for years. Only when I went back on Tobi (went off for about 6 years) did this problem start. Does anyone else have this problem?


Andrea 32 w/CF
 
P

Playswithpixels

New member
I switch from Tobi to Coly-mycin every other month. When I do Tobi I feel pretty good after a treatment. When I do the Colistin, I end up feeling tight and like I can't breath in deep enough. I dread it when it is time to switch from Tobi. My CF doctor's answer was to go without an antibiotic when I am off of Tobi. I am too nervous to try this. Coly-mycin didn't used to do this, and I was on it for years. Only when I went back on Tobi (went off for about 6 years) did this problem start. Does anyone else have this problem?


Andrea 32 w/CF
 
P

Playswithpixels

New member
I switch from Tobi to Coly-mycin every other month. When I do Tobi I feel pretty good after a treatment. When I do the Colistin, I end up feeling tight and like I can't breath in deep enough. I dread it when it is time to switch from Tobi. My CF doctor's answer was to go without an antibiotic when I am off of Tobi. I am too nervous to try this. Coly-mycin didn't used to do this, and I was on it for years. Only when I went back on Tobi (went off for about 6 years) did this problem start. Does anyone else have this problem?


Andrea 32 w/CF
 
P

Playswithpixels

New member
I switch from Tobi to Coly-mycin every other month. When I do Tobi I feel pretty good after a treatment. When I do the Colistin, I end up feeling tight and like I can't breath in deep enough. I dread it when it is time to switch from Tobi. My CF doctor's answer was to go without an antibiotic when I am off of Tobi. I am too nervous to try this. Coly-mycin didn't used to do this, and I was on it for years. Only when I went back on Tobi (went off for about 6 years) did this problem start. Does anyone else have this problem?
<br />
<br />
<br />Andrea 32 w/CF
 
C

Chaggie

New member
I lasted about 2 weeks on Clistin before I had to stop, gives me some nasty reactive airway issues.
 
C

Chaggie

New member
I lasted about 2 weeks on Clistin before I had to stop, gives me some nasty reactive airway issues.
 
C

Chaggie

New member
I lasted about 2 weeks on Clistin before I had to stop, gives me some nasty reactive airway issues.
 
C

Chaggie

New member
I lasted about 2 weeks on Clistin before I had to stop, gives me some nasty reactive airway issues.
 
S

SaltyAndSweet

New member
Hi there. I am not much help, but that drug concerns me. My hospital no longer gives nebs of the drug because of a death that most possibly was linked to it. Here's a youtube video I found about it. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>Just a heads up!
 
S

SaltyAndSweet

New member
Hi there. I am not much help, but that drug concerns me. My hospital no longer gives nebs of the drug because of a death that most possibly was linked to it. Here's a youtube video I found about it. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>Just a heads up!
 
S

SaltyAndSweet

New member
Hi there. I am not much help, but that drug concerns me. My hospital no longer gives nebs of the drug because of a death that most possibly was linked to it. Here's a youtube video I found about it. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>Just a heads up!
 
S

SaltyAndSweet

New member
Hi there. I am not much help, but that drug concerns me. My hospital no longer gives nebs of the drug because of a death that most possibly was linked to it. Here's a youtube video I found about it. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>Just a heads up!
 
S

SaltyAndSweet

New member
Hi there. I am not much help, but that drug concerns me. My hospital no longer gives nebs of the drug because of a death that most possibly was linked to it. Here's a youtube video I found about it. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a><br />Just a heads up!
 
S

Sevenstars

New member
That youtube video is scary to me. Not because of the death, but because it might make them take it off the market or something like that. :/ Colistin has been a wonder drug for me, I've never had any problems... I would say I've recovered at least 10-15% lung function since starting it.

In response to the video, I have never seen Colistin come premixed. I get the powder and mix it myself before every single dose, and I would advise anyone else using it to do the same.

Andrea, I'm sorry your having these problems. There is no other med your doc would be willing to try?
 
S

Sevenstars

New member
That youtube video is scary to me. Not because of the death, but because it might make them take it off the market or something like that. :/ Colistin has been a wonder drug for me, I've never had any problems... I would say I've recovered at least 10-15% lung function since starting it.

In response to the video, I have never seen Colistin come premixed. I get the powder and mix it myself before every single dose, and I would advise anyone else using it to do the same.

Andrea, I'm sorry your having these problems. There is no other med your doc would be willing to try?
 
S

Sevenstars

New member
That youtube video is scary to me. Not because of the death, but because it might make them take it off the market or something like that. :/ Colistin has been a wonder drug for me, I've never had any problems... I would say I've recovered at least 10-15% lung function since starting it.

In response to the video, I have never seen Colistin come premixed. I get the powder and mix it myself before every single dose, and I would advise anyone else using it to do the same.

Andrea, I'm sorry your having these problems. There is no other med your doc would be willing to try?
 
S

Sevenstars

New member
That youtube video is scary to me. Not because of the death, but because it might make them take it off the market or something like that. :/ Colistin has been a wonder drug for me, I've never had any problems... I would say I've recovered at least 10-15% lung function since starting it.

In response to the video, I have never seen Colistin come premixed. I get the powder and mix it myself before every single dose, and I would advise anyone else using it to do the same.

Andrea, I'm sorry your having these problems. There is no other med your doc would be willing to try?
 
S

Sevenstars

New member
That youtube video is scary to me. Not because of the death, but because it might make them take it off the market or something like that. :/ Colistin has been a wonder drug for me, I've never had any problems... I would say I've recovered at least 10-15% lung function since starting it.
<br />
<br />In response to the video, I have never seen Colistin come premixed. I get the powder and mix it myself before every single dose, and I would advise anyone else using it to do the same.
<br />
<br />Andrea, I'm sorry your having these problems. There is no other med your doc would be willing to try?
 
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