Nebulized Colistin

AnD

New member
I do the nebulized Colistin, and alternate it with my Tobi (one time when I'm sick I do Colistin, the next time I'm sick I do Tobi). I like it a lot, and for a while there, it was all I had too (the Tobi did the same thing to me- sob- now I take my Advair 250 right before my Tobi, and I can tolerate it- unless I forget a dose of the Advair, and then the party is over for that round). I had to take a break from Tobi for a few years. I like the Colistin <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Since they changed my prescription from the .9% to sterile water to mix it with, it doesn't foam as much (but I don't get the coughing anymore like Sonia was talking about- I used to call it "lung wash" lol).

Make sure you ask specifically for large bore needles though- somehow, I ended up with long, small bore needles (which are a pita), and apparently, you need a specific size on your prescription- and when I tried to change it, my meds got held up last time because they didn't get a call back when they called clinic (I know you are shocked, lol) and I just told them to forget it and send the meds.

You can get the water and needles for free from the CF Services, btw, and X-Gen (who makes a generic Colistin) had a program with Source CF (or maybe it's the otherway around, anyways...) that you can send in a box top and a reciept (or a copy of the prescription-one of the two) and get a free bottle of CF Source vitamins, which I think they are still doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

AnD

New member
I do the nebulized Colistin, and alternate it with my Tobi (one time when I'm sick I do Colistin, the next time I'm sick I do Tobi). I like it a lot, and for a while there, it was all I had too (the Tobi did the same thing to me- sob- now I take my Advair 250 right before my Tobi, and I can tolerate it- unless I forget a dose of the Advair, and then the party is over for that round). I had to take a break from Tobi for a few years. I like the Colistin <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Since they changed my prescription from the .9% to sterile water to mix it with, it doesn't foam as much (but I don't get the coughing anymore like Sonia was talking about- I used to call it "lung wash" lol).

Make sure you ask specifically for large bore needles though- somehow, I ended up with long, small bore needles (which are a pita), and apparently, you need a specific size on your prescription- and when I tried to change it, my meds got held up last time because they didn't get a call back when they called clinic (I know you are shocked, lol) and I just told them to forget it and send the meds.

You can get the water and needles for free from the CF Services, btw, and X-Gen (who makes a generic Colistin) had a program with Source CF (or maybe it's the otherway around, anyways...) that you can send in a box top and a reciept (or a copy of the prescription-one of the two) and get a free bottle of CF Source vitamins, which I think they are still doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

AnD

New member
I do the nebulized Colistin, and alternate it with my Tobi (one time when I'm sick I do Colistin, the next time I'm sick I do Tobi). I like it a lot, and for a while there, it was all I had too (the Tobi did the same thing to me- sob- now I take my Advair 250 right before my Tobi, and I can tolerate it- unless I forget a dose of the Advair, and then the party is over for that round). I had to take a break from Tobi for a few years. I like the Colistin <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Since they changed my prescription from the .9% to sterile water to mix it with, it doesn't foam as much (but I don't get the coughing anymore like Sonia was talking about- I used to call it "lung wash" lol).

Make sure you ask specifically for large bore needles though- somehow, I ended up with long, small bore needles (which are a pita), and apparently, you need a specific size on your prescription- and when I tried to change it, my meds got held up last time because they didn't get a call back when they called clinic (I know you are shocked, lol) and I just told them to forget it and send the meds.

You can get the water and needles for free from the CF Services, btw, and X-Gen (who makes a generic Colistin) had a program with Source CF (or maybe it's the otherway around, anyways...) that you can send in a box top and a reciept (or a copy of the prescription-one of the two) and get a free bottle of CF Source vitamins, which I think they are still doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

AnD

New member
I do the nebulized Colistin, and alternate it with my Tobi (one time when I'm sick I do Colistin, the next time I'm sick I do Tobi). I like it a lot, and for a while there, it was all I had too (the Tobi did the same thing to me- sob- now I take my Advair 250 right before my Tobi, and I can tolerate it- unless I forget a dose of the Advair, and then the party is over for that round). I had to take a break from Tobi for a few years. I like the Colistin <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Since they changed my prescription from the .9% to sterile water to mix it with, it doesn't foam as much (but I don't get the coughing anymore like Sonia was talking about- I used to call it "lung wash" lol).

Make sure you ask specifically for large bore needles though- somehow, I ended up with long, small bore needles (which are a pita), and apparently, you need a specific size on your prescription- and when I tried to change it, my meds got held up last time because they didn't get a call back when they called clinic (I know you are shocked, lol) and I just told them to forget it and send the meds.

You can get the water and needles for free from the CF Services, btw, and X-Gen (who makes a generic Colistin) had a program with Source CF (or maybe it's the otherway around, anyways...) that you can send in a box top and a reciept (or a copy of the prescription-one of the two) and get a free bottle of CF Source vitamins, which I think they are still doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

AnD

New member
I do the nebulized Colistin, and alternate it with my Tobi (one time when I'm sick I do Colistin, the next time I'm sick I do Tobi). I like it a lot, and for a while there, it was all I had too (the Tobi did the same thing to me- sob- now I take my Advair 250 right before my Tobi, and I can tolerate it- unless I forget a dose of the Advair, and then the party is over for that round). I had to take a break from Tobi for a few years. I like the Colistin <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
<br />
<br />Since they changed my prescription from the .9% to sterile water to mix it with, it doesn't foam as much (but I don't get the coughing anymore like Sonia was talking about- I used to call it "lung wash" lol).
<br />
<br />Make sure you ask specifically for large bore needles though- somehow, I ended up with long, small bore needles (which are a pita), and apparently, you need a specific size on your prescription- and when I tried to change it, my meds got held up last time because they didn't get a call back when they called clinic (I know you are shocked, lol) and I just told them to forget it and send the meds.
<br />
<br />You can get the water and needles for free from the CF Services, btw, and X-Gen (who makes a generic Colistin) had a program with Source CF (or maybe it's the otherway around, anyways...) that you can send in a box top and a reciept (or a copy of the prescription-one of the two) and get a free bottle of CF Source vitamins, which I think they are still doing. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JazzysMom

New member
I am suppose to alternate Colistin with my Tobi. Quite frankly I havent in a long time just because of it not being user friendly.

I respond well & prefer the taste, smell of Colistin to Tobi tho.
 

JazzysMom

New member
I am suppose to alternate Colistin with my Tobi. Quite frankly I havent in a long time just because of it not being user friendly.

I respond well & prefer the taste, smell of Colistin to Tobi tho.
 

JazzysMom

New member
I am suppose to alternate Colistin with my Tobi. Quite frankly I havent in a long time just because of it not being user friendly.

I respond well & prefer the taste, smell of Colistin to Tobi tho.
 

JazzysMom

New member
I am suppose to alternate Colistin with my Tobi. Quite frankly I havent in a long time just because of it not being user friendly.

I respond well & prefer the taste, smell of Colistin to Tobi tho.
 

JazzysMom

New member
I am suppose to alternate Colistin with my Tobi. Quite frankly I havent in a long time just because of it not being user friendly.
<br />
<br />I respond well & prefer the taste, smell of Colistin to Tobi tho.
 

jodijp

New member
Add me to the group who cannot tolerate Tobi AT ALL but do great on colistin. Even though it is a PITA too mix up, it always makes me feel better after my 28 day round. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Add me to the group who cannot tolerate Tobi AT ALL but do great on colistin. Even though it is a PITA too mix up, it always makes me feel better after my 28 day round. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Add me to the group who cannot tolerate Tobi AT ALL but do great on colistin. Even though it is a PITA too mix up, it always makes me feel better after my 28 day round. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Add me to the group who cannot tolerate Tobi AT ALL but do great on colistin. Even though it is a PITA too mix up, it always makes me feel better after my 28 day round. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Add me to the group who cannot tolerate Tobi AT ALL but do great on colistin. Even though it is a PITA too mix up, it always makes me feel better after my 28 day round. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I am on it as well. Didn't like the TOBI. It works pretty well. Just don't touch it if you don't have to (once you've mixed it)... it's sticky. I hate that. Haha. And you'll want to brush your teeth when it's done because it makes your tongue fuzzy. But it's good stuff, I think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I am on it as well. Didn't like the TOBI. It works pretty well. Just don't touch it if you don't have to (once you've mixed it)... it's sticky. I hate that. Haha. And you'll want to brush your teeth when it's done because it makes your tongue fuzzy. But it's good stuff, I think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I am on it as well. Didn't like the TOBI. It works pretty well. Just don't touch it if you don't have to (once you've mixed it)... it's sticky. I hate that. Haha. And you'll want to brush your teeth when it's done because it makes your tongue fuzzy. But it's good stuff, I think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I am on it as well. Didn't like the TOBI. It works pretty well. Just don't touch it if you don't have to (once you've mixed it)... it's sticky. I hate that. Haha. And you'll want to brush your teeth when it's done because it makes your tongue fuzzy. But it's good stuff, I think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I am on it as well. Didn't like the TOBI. It works pretty well. Just don't touch it if you don't have to (once you've mixed it)... it's sticky. I hate that. Haha. And you'll want to brush your teeth when it's done because it makes your tongue fuzzy. But it's good stuff, I think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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