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toxic?

M

mabusincarnate

New member
they put me on Colistimethate in an attempt to bring my FEV1 back to baseline. the FDA doesn't approve it for inhalation. the therapist told me not to let it sit in my neb cause it can become toxic.

i wanted reach over the counter and smack the pharmacist when she tried to tell me i can't compound my own stuff. i have more experience with meds than they do.

to the point:

has anyone inhaled this stuff? can you tell me about it? this is my first time taking it.

p.s. if my wife reads this, baby, buy me an iphone.
 
M

mabusincarnate

New member
they put me on Colistimethate in an attempt to bring my FEV1 back to baseline. the FDA doesn't approve it for inhalation. the therapist told me not to let it sit in my neb cause it can become toxic.

i wanted reach over the counter and smack the pharmacist when she tried to tell me i can't compound my own stuff. i have more experience with meds than they do.

to the point:

has anyone inhaled this stuff? can you tell me about it? this is my first time taking it.

p.s. if my wife reads this, baby, buy me an iphone.
 
M

mabusincarnate

New member
they put me on Colistimethate in an attempt to bring my FEV1 back to baseline. the FDA doesn't approve it for inhalation. the therapist told me not to let it sit in my neb cause it can become toxic.

i wanted reach over the counter and smack the pharmacist when she tried to tell me i can't compound my own stuff. i have more experience with meds than they do.

to the point:

has anyone inhaled this stuff? can you tell me about it? this is my first time taking it.

p.s. if my wife reads this, baby, buy me an iphone.
 
M

mabusincarnate

New member
they put me on Colistimethate in an attempt to bring my FEV1 back to baseline. the FDA doesn't approve it for inhalation. the therapist told me not to let it sit in my neb cause it can become toxic.

i wanted reach over the counter and smack the pharmacist when she tried to tell me i can't compound my own stuff. i have more experience with meds than they do.

to the point:

has anyone inhaled this stuff? can you tell me about it? this is my first time taking it.

p.s. if my wife reads this, baby, buy me an iphone.
 
M

mabusincarnate

New member
they put me on Colistimethate in an attempt to bring my FEV1 back to baseline. the FDA doesn't approve it for inhalation. the therapist told me not to let it sit in my neb cause it can become toxic.
<br />
<br />i wanted reach over the counter and smack the pharmacist when she tried to tell me i can't compound my own stuff. i have more experience with meds than they do.
<br />
<br />to the point:
<br />
<br />has anyone inhaled this stuff? can you tell me about it? this is my first time taking it.
<br />
<br />p.s. if my wife reads this, baby, buy me an iphone.
 
L

lightNlife

New member
Yes, I inhale it every other month. I trade off with tobramycin.

When using it in a neb, you're doing what's called "off label use." It's the pharmacist's legal responsibility to let the patient know of any problems or adverse side effects the medication can cause. There are a lot of things that CFers do to make antibiotics to work better for them, whereas the general public has no problem getting them to work as is. Some of these the pharmacists are aware of, others aren't.

Here is something you should watch just to be informed.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>
You do have to make sure to rinse the nebs completely after use because the colistin has a very short shelf life. Even the IV version has to be mixed each time it's going to be used, otherwise it goes bad. The main issue is the preservatives or lack thereof in the drug.

I'm sure you're a pro with rinsing and sterilizing nebs, so inhaling it shouldn't be too big an issue for you. Keep an eye out for the side effects; your mouth will probably feel numb, especially your lips and the area right around your mouth.
 
L

lightNlife

New member
Yes, I inhale it every other month. I trade off with tobramycin.

When using it in a neb, you're doing what's called "off label use." It's the pharmacist's legal responsibility to let the patient know of any problems or adverse side effects the medication can cause. There are a lot of things that CFers do to make antibiotics to work better for them, whereas the general public has no problem getting them to work as is. Some of these the pharmacists are aware of, others aren't.

Here is something you should watch just to be informed.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>
You do have to make sure to rinse the nebs completely after use because the colistin has a very short shelf life. Even the IV version has to be mixed each time it's going to be used, otherwise it goes bad. The main issue is the preservatives or lack thereof in the drug.

I'm sure you're a pro with rinsing and sterilizing nebs, so inhaling it shouldn't be too big an issue for you. Keep an eye out for the side effects; your mouth will probably feel numb, especially your lips and the area right around your mouth.
 
L

lightNlife

New member
Yes, I inhale it every other month. I trade off with tobramycin.

When using it in a neb, you're doing what's called "off label use." It's the pharmacist's legal responsibility to let the patient know of any problems or adverse side effects the medication can cause. There are a lot of things that CFers do to make antibiotics to work better for them, whereas the general public has no problem getting them to work as is. Some of these the pharmacists are aware of, others aren't.

Here is something you should watch just to be informed.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>
You do have to make sure to rinse the nebs completely after use because the colistin has a very short shelf life. Even the IV version has to be mixed each time it's going to be used, otherwise it goes bad. The main issue is the preservatives or lack thereof in the drug.

I'm sure you're a pro with rinsing and sterilizing nebs, so inhaling it shouldn't be too big an issue for you. Keep an eye out for the side effects; your mouth will probably feel numb, especially your lips and the area right around your mouth.
 
L

lightNlife

New member
Yes, I inhale it every other month. I trade off with tobramycin.

When using it in a neb, you're doing what's called "off label use." It's the pharmacist's legal responsibility to let the patient know of any problems or adverse side effects the medication can cause. There are a lot of things that CFers do to make antibiotics to work better for them, whereas the general public has no problem getting them to work as is. Some of these the pharmacists are aware of, others aren't.

Here is something you should watch just to be informed.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a>
You do have to make sure to rinse the nebs completely after use because the colistin has a very short shelf life. Even the IV version has to be mixed each time it's going to be used, otherwise it goes bad. The main issue is the preservatives or lack thereof in the drug.

I'm sure you're a pro with rinsing and sterilizing nebs, so inhaling it shouldn't be too big an issue for you. Keep an eye out for the side effects; your mouth will probably feel numb, especially your lips and the area right around your mouth.
 
L

lightNlife

New member
Yes, I inhale it every other month. I trade off with tobramycin.
<br />
<br />When using it in a neb, you're doing what's called "off label use." It's the pharmacist's legal responsibility to let the patient know of any problems or adverse side effects the medication can cause. There are a lot of things that CFers do to make antibiotics to work better for them, whereas the general public has no problem getting them to work as is. Some of these the pharmacists are aware of, others aren't.
<br />
<br />Here is something you should watch just to be informed.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=NCGL4n8TcG0
">http://www.youtube.com/watch?v=NCGL4n8TcG0
</a><br />
<br />You do have to make sure to rinse the nebs completely after use because the colistin has a very short shelf life. Even the IV version has to be mixed each time it's going to be used, otherwise it goes bad. The main issue is the preservatives or lack thereof in the drug.
<br />
<br />I'm sure you're a pro with rinsing and sterilizing nebs, so inhaling it shouldn't be too big an issue for you. Keep an eye out for the side effects; your mouth will probably feel numb, especially your lips and the area right around your mouth.
<br />
<br />
 
M

mabusincarnate

New member
i didn't realize this until just a few minutes ago. i had calisten (sp?) in the hospital. i told the docs filling in for the CF doc that my mouth was numb. they had no idea why. that explains a lot.
 
M

mabusincarnate

New member
i didn't realize this until just a few minutes ago. i had calisten (sp?) in the hospital. i told the docs filling in for the CF doc that my mouth was numb. they had no idea why. that explains a lot.
 
M

mabusincarnate

New member
i didn't realize this until just a few minutes ago. i had calisten (sp?) in the hospital. i told the docs filling in for the CF doc that my mouth was numb. they had no idea why. that explains a lot.
 
M

mabusincarnate

New member
i didn't realize this until just a few minutes ago. i had calisten (sp?) in the hospital. i told the docs filling in for the CF doc that my mouth was numb. they had no idea why. that explains a lot.
 
M

mabusincarnate

New member
i didn't realize this until just a few minutes ago. i had calisten (sp?) in the hospital. i told the docs filling in for the CF doc that my mouth was numb. they had no idea why. that explains a lot.
<br />
<br />
<br />
 
K

Kristen

New member
I have been taking colistin every other month for a few years now. The toxic part only happens with pre-mixed colistin because the medicine changes over time, and this is why you have to mix it right before you use it.

Also, as an FYI, I take mine using a Pari Plus neb and it causes it to foam a lot - so this is normal in case you are curious. I've seen some people on here use an eFlow for colistin and that prevents the foaming, but my doctor won't let me get one <img src="i/expressions/face-icon-small-sad.gif" border="0">

That's interesting about the mouth-numbing properties - I have not experienced that.
 
K

Kristen

New member
I have been taking colistin every other month for a few years now. The toxic part only happens with pre-mixed colistin because the medicine changes over time, and this is why you have to mix it right before you use it.

Also, as an FYI, I take mine using a Pari Plus neb and it causes it to foam a lot - so this is normal in case you are curious. I've seen some people on here use an eFlow for colistin and that prevents the foaming, but my doctor won't let me get one <img src="i/expressions/face-icon-small-sad.gif" border="0">

That's interesting about the mouth-numbing properties - I have not experienced that.
 
K

Kristen

New member
I have been taking colistin every other month for a few years now. The toxic part only happens with pre-mixed colistin because the medicine changes over time, and this is why you have to mix it right before you use it.

Also, as an FYI, I take mine using a Pari Plus neb and it causes it to foam a lot - so this is normal in case you are curious. I've seen some people on here use an eFlow for colistin and that prevents the foaming, but my doctor won't let me get one <img src="i/expressions/face-icon-small-sad.gif" border="0">

That's interesting about the mouth-numbing properties - I have not experienced that.
 
K

Kristen

New member
I have been taking colistin every other month for a few years now. The toxic part only happens with pre-mixed colistin because the medicine changes over time, and this is why you have to mix it right before you use it.

Also, as an FYI, I take mine using a Pari Plus neb and it causes it to foam a lot - so this is normal in case you are curious. I've seen some people on here use an eFlow for colistin and that prevents the foaming, but my doctor won't let me get one <img src="i/expressions/face-icon-small-sad.gif" border="0">

That's interesting about the mouth-numbing properties - I have not experienced that.
 
K

Kristen

New member
I have been taking colistin every other month for a few years now. The toxic part only happens with pre-mixed colistin because the medicine changes over time, and this is why you have to mix it right before you use it.
<br />
<br />Also, as an FYI, I take mine using a Pari Plus neb and it causes it to foam a lot - so this is normal in case you are curious. I've seen some people on here use an eFlow for colistin and that prevents the foaming, but my doctor won't let me get one <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />That's interesting about the mouth-numbing properties - I have not experienced that.
 
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