colistin users

C

Chaggie

New member
My doctor just took me off Tobi, due to bronchial spasms not
resistance, and put me on colistin.  I was wondering how you
liked it and if there is any difference.  When mixing your
doses do you do them individually or mix morning and night at the
same time,I know you have to discard any unused after 24 hr.
 
L

Lilith

New member
I, too, was taken off of TOBI and went to colistin full time.
 My only complaints are 1) it tastes funny and 2) you have to
mix it yourself, which can be a pain if you have to make a new
batch first thing in the morning.  Other than that, my
experience with it has been good.  When I do need a new batch,
I usually mix four (two day's worth) and my understanding is that
it lasts in the fridge for 72 hours.  The timing seems to
vary, though, depending on whom you ask.
 
B

blackchameleon

New member
hey Chaggie, i have used colistin for a few years now. i love it!.
in Australia we receive it already mixed, i didn't know it came
differently. i have colisten 1 month, tobi 1 month and oral
ciproxin 1 month then do it all over again!do that routine 4 times
a year.  on reflection, maybe our docs dont think we have the
smarts to mix it ourselves duh.!! 
 
C

Chaggie

New member
Thank you for the feedback, i'll have to remember to mix the stuff
at night, I definately don't want o be mixing stuff in the morning.
 
T

thelizardqueen

New member
I have used Colistin off and on for a bit now, and I find I actually cannot use it due to bronchial spasms. However when I was on it, I would mix two days worth at one time. I found that mixing a day in advance and leaving it in the fridge lessened the foaming action I got in my cup when I used it.
 
J

julie

New member
It's funny your doc put you on colistin because you were having bronchial spams with Tobi. I say that because the #1 side effect of colistin is SEVERE bronchical spasms. I suppose it's worth at least one try though, maybe you won't have a reaction at all.

A recommendation... Do your first few doses when someone is home with you, a friend, family member... that way in case you do have a reaction, someone is there to help you.

Ditto the recommendations of making it the night before, or even 2 days in advance.
 
C

Chaggie

New member
Did my first dose this morning, my wife says I was coughing less,
 We'll see what happens over the next few weeks.
 
J

JazzysMom

New member
A bit late on this, but I will give input anyway. I alternate Colistin & Tobi. I hate tobi. It makes me hoarse, cough & has a nasty taste/smell, but it does help with the one strain of PA so I deal with it. I love Colistin. It doesnt cause ME bronchial spasm & the smell reminds me of butter. The ONLY thing I dont like about it is that its not user friendly (at least what I get because it has to be mixed) & its very frothy when administered!
 
A

anonymous

New member
Well that was a failed experiment, started out ok but progressivly got more and more asthmatic til I finally had to stop the treatments. Oh well Back to Tobi I guess.
 
E

Emily65Roses

New member
I prefer Colistin, I refuse to do inhaled Tobi. Colistin is a pain to mix, and it tastes like two parts rotten, one part sweet... It also makes me mouth EXTRA fuzzy, but I much prefer it to the Tobi. As for mixing, I do a day's worth at a time. I'll mix them at night, when I'm doing my night dose, so that the next day is good to go. That way you don't have to do it one drop at a time (to avoid fizzing), you can just push it all in fast, and the fluff has gone down by morning. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Emily65Roses

New member
Oh damn my reply was useless, you stopped using it. Ahahahaa. I need to pay attention gooder. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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TwistedTanya

New member
I am shocked to hear that you all are still having to mix your own colisten. I have been getting it sent to me premixed from Foundation Care for about a year now. The only thing is, it is reconstituted for the eFlow so you have to use it with that. It's so wonderful though b/c it cuts down the time signifigantly. Usually takes me about 6 min for a treatment. It does have to be kept in the refridgerator but is good for about about a month and half. Colisten has been the best antibiotic I have ever been put on. I started it about 5 years ago and my PFT's went up after being on it. Whenever I would go off it and alternate with Cipro, I'd start feeling sick again. So, for the past 2 years I have been on it all the time and haven't developed any psuedomonas. I currently do have aspergillos but that isn't from the Colisten. Anyways, you should definately check out the eFlow and getting your Colisten for it!!!! I LOVE IT!!!
 
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TwistedTanya

New member
I am shocked to hear that you all are still having to mix your own colisten. I have been getting it sent to me premixed from Foundation Care for about a year now. The only thing is, it is reconstituted for the eFlow so you have to use it with that. It's so wonderful though b/c it cuts down the time signifigantly. Usually takes me about 6 min for a treatment. It does have to be kept in the refridgerator but is good for about about a month and half. Colisten has been the best antibiotic I have ever been put on. I started it about 5 years ago and my PFT's went up after being on it. Whenever I would go off it and alternate with Cipro, I'd start feeling sick again. So, for the past 2 years I have been on it all the time and haven't developed any psuedomonas. I currently do have aspergillos but that isn't from the Colisten. Anyways, you should definately check out the eFlow and getting your Colisten for it!!!! I LOVE IT!!!
 
T

TwistedTanya

New member
I am shocked to hear that you all are still having to mix your own colisten. I have been getting it sent to me premixed from Foundation Care for about a year now. The only thing is, it is reconstituted for the eFlow so you have to use it with that. It's so wonderful though b/c it cuts down the time signifigantly. Usually takes me about 6 min for a treatment. It does have to be kept in the refridgerator but is good for about about a month and half. Colisten has been the best antibiotic I have ever been put on. I started it about 5 years ago and my PFT's went up after being on it. Whenever I would go off it and alternate with Cipro, I'd start feeling sick again. So, for the past 2 years I have been on it all the time and haven't developed any psuedomonas. I currently do have aspergillos but that isn't from the Colisten. Anyways, you should definately check out the eFlow and getting your Colisten for it!!!! I LOVE IT!!!
 
J

jfarel

New member
I use eflow and colistin too. Can't tolerate the tobi, but I do alright on the coly. If you have the eflow, you get the coly premixed as well. It is stronger though because you inhale more into your lungs than with the other nebs, so I had to do a smaller dose because of chest tightness.
 
J

jfarel

New member
I use eflow and colistin too. Can't tolerate the tobi, but I do alright on the coly. If you have the eflow, you get the coly premixed as well. It is stronger though because you inhale more into your lungs than with the other nebs, so I had to do a smaller dose because of chest tightness.
 
J

jfarel

New member
I use eflow and colistin too. Can't tolerate the tobi, but I do alright on the coly. If you have the eflow, you get the coly premixed as well. It is stronger though because you inhale more into your lungs than with the other nebs, so I had to do a smaller dose because of chest tightness.
 
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bigstar

New member
hiii im new and i was just wondering....

I live in greece and last summer i had to be hospitalized to get colistin through my vains....now i found out that you take it inhaled....is that an option?

Maybe silly but im confused...sorry
 
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