I have been told my last sputum cultures shows a new strain of pseudomonas that is resistant to the tobi/tobramyacin that I have used over the years. I am now to start alternating my Tobi with Colistin. My doctor who is now on vacation called into the office social worker to have her check on me before I start it & to have me begin with 1/2 vial per dose for 1 weeks to see if I have any problems before dusing the prescriped 1 vial per dose. Besides it not being user friendly (having to mix it before use) & the frothiness of it......has anyone had any reactions to it? Even my pharmacy addressed the potential side affects. Mainly because my friend works there & keeps up to date on the new meds I go on. Now I am a little nervous about what to expect.
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Colistin Usage
- Thread starter JazzysMom
- Start date
Emily65Roses
New member
The only problems I had with Colistin were the lack of user-friendliness, and the frothy way it gets when you mix it. That was all. I didn't react to it badly.
I have alternated colistin with TOBI for a few years now. I have always found colistin to be very good.
For the foaming use a nebulizer from Pari, I think its called the Star. It has a baffle in it to keep most of the foam in the bottom of the neb.
My brother has tried to use it but it causes him hemoptysis.
It does take a few steps to get to the finished solution.
-steve
For the foaming use a nebulizer from Pari, I think its called the Star. It has a baffle in it to keep most of the foam in the bottom of the neb.
My brother has tried to use it but it causes him hemoptysis.
It does take a few steps to get to the finished solution.
-steve
I feel slightly worse during colistin months -- shorter of breath, more congested, etc. I don't know if this is because of the lack of tobi or because of the colistin itself. Or maybe it's just coincidence. Have others noticed this phenomenon?
What I do know is that I'm going to work in "baffle" as a noun at my next cocktail party.
Q
What I do know is that I'm going to work in "baffle" as a noun at my next cocktail party.
Q
Q
I've had that exact problem w/ both TOBI & Colistin. It pretty much sucks too, because those are good meds, but me having the ability to breath is important too, so I can't do either of those. The trade off of quality of life while on them just was not worth the benefits to me. I have a low lung function though, if I was 50% or better, I may have put up with the shortness of breath but as it stands now, I couldn't even talk hardly without getting short of breath while on these meds. (hope that made sense)<img src="i/expressions/face-icon-small-smile.gif" border="0">
So you're not alone in this side effect.
I've had that exact problem w/ both TOBI & Colistin. It pretty much sucks too, because those are good meds, but me having the ability to breath is important too, so I can't do either of those. The trade off of quality of life while on them just was not worth the benefits to me. I have a low lung function though, if I was 50% or better, I may have put up with the shortness of breath but as it stands now, I couldn't even talk hardly without getting short of breath while on these meds. (hope that made sense)<img src="i/expressions/face-icon-small-smile.gif" border="0">
So you're not alone in this side effect.
i was on colistin for years and thought it was extremely helpful. unfortunately, i am not able to use it anymore because it is causing me to have serious bronchial spasms. if you can handle it i think it is very effective for pseudomon. i also heard that it is very difficult to become resistant to colistin. by the way, i am currently on iv colistin and am having good success.
Hello! My husband has CF and last year had a very resistent strand of pseudo. The doctors put him on IV colistin heavy doses! He wanted to ask someone who has been on IV colistin some questions. He is not feeling well right now, and thinks it might help. Let me know if you could answer some of his questions for us. Thanks so much, Deana
thelizardqueen
New member
I've been on Colistin a couple of times, and found it did a great job of getting rid of those nasty bugs in me. That being said, its somewhat harsh on my lungs, so it takes me a couple of weeks to get over that.
Any reason why they put him on IV colistin vice the nebulized version. Does he not respond well to tobi? My husband has been on nebulized colistin but not on an IV. I do know that from nebulized colistin some people get really affected. Coughing attacks while/immediately after using it, exhaustion, blurred vision... hopefully someone who's done an IV of it can come on here.
I heard and always read everywhere that it isn't good to premix the colistine. I've heard poeple mix before they go to bed and keep in cold until the next morning. Though i've heard from others that that isn't good also.. I don't do it, always mix it before i'm doing my nebs. You just have to get used to it i guess.. I do one vial twice a day.
It works for me, i think i'd be on iv's constantly if i didn't have this, i don't have any sideeffects. Sometimes, when my lungs are more congested i feel a little more short of breath during and after doing my colistin nebs. But i don't think it has much to do with the colistin, but with the kind of neb i use for it. It's a system with a filter and all (ventstream), and it's heavier to breath through then the regular one (sidestream) i use for pulmozyme.
Good luck Melissa! I hope the colistin will work for you!
It works for me, i think i'd be on iv's constantly if i didn't have this, i don't have any sideeffects. Sometimes, when my lungs are more congested i feel a little more short of breath during and after doing my colistin nebs. But i don't think it has much to do with the colistin, but with the kind of neb i use for it. It's a system with a filter and all (ventstream), and it's heavier to breath through then the regular one (sidestream) i use for pulmozyme.
Good luck Melissa! I hope the colistin will work for you!
Oops sorry, i only saw now that the nebs messages were from months ago<img src="i/expressions/face-icon-small-smile.gif" border="0">
I had a friend of mine who had side effects when she was on colistin iv's. I don't know what exactly anymore but it wasn't nice.. I'll ask her about it and post when i know more.
I had a friend of mine who had side effects when she was on colistin iv's. I don't know what exactly anymore but it wasn't nice.. I'll ask her about it and post when i know more.
My daughter has used inhaled Colistin off and on for the last year and a half with out having bad side effects. We receive it premixed from an apothecary and receive a two week supply at a time. I do have a question over the weekend my daughther was away from her dorm room and when she returned after two days discovered that the fridge was unplugged. So her Colistin was room temp for at least 24 hours. We are not sure whether she should go ahead and use it or consider that it is no longer any good. I plan the call the apothecary tomorrow morning but does anyone have any advice?
cutiepatootie
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Hello! My husband
has CF and last year had a very resistent strand of pseudo. The
doctors put him on IV colistin heavy doses! He wanted to ask
someone who has been on IV colistin some questions. He is not
feeling well right now, and thinks it might help. Let me know if
you could answer some of his questions for us. Thanks so much,
Deana</end quote></div><br>
<br>
<span style=
" font-size: small; font-family: Arial; color: #800000;">The last
time I was on Colistin IV, at least I think that's what it was.
Anyway, I did feel fine the first day I was on it, but all of
a sudden the second day the nurse started to run the dose into me I
felt really funny, light headed, dizzy like I was going to faint,
and then I started to feel like I couldn't breath,and my tongue
started to swelling up, and my heart rate went way up a lot, I
felt noxious. I thought it might be my morphine interfering
with it, they couldn't figure it out. They ended up just
running the dose really slow in to me, but I always felt sick with
it that never stop, but it did help when they ran it into me slow,
I didn't feel as sick that way. I hope that I have help out
your husband a little bit with his question.
has CF and last year had a very resistent strand of pseudo. The
doctors put him on IV colistin heavy doses! He wanted to ask
someone who has been on IV colistin some questions. He is not
feeling well right now, and thinks it might help. Let me know if
you could answer some of his questions for us. Thanks so much,
Deana</end quote></div><br>
<br>
<span style=
" font-size: small; font-family: Arial; color: #800000;">The last
time I was on Colistin IV, at least I think that's what it was.
Anyway, I did feel fine the first day I was on it, but all of
a sudden the second day the nurse started to run the dose into me I
felt really funny, light headed, dizzy like I was going to faint,
and then I started to feel like I couldn't breath,and my tongue
started to swelling up, and my heart rate went way up a lot, I
felt noxious. I thought it might be my morphine interfering
with it, they couldn't figure it out. They ended up just
running the dose really slow in to me, but I always felt sick with
it that never stop, but it did help when they ran it into me slow,
I didn't feel as sick that way. I hope that I have help out
your husband a little bit with his question.
Ok, now i'm lost<img src="i/expressions/face-icon-small-confused.gif" border="0">
I've always thought and think the leaflet(sp?) says it to that i have to mix it right before i use it.. I'll ask my pharmacy next time when i get there. It sure would be nice if i could make a few when i feel like it (would i ever hehe) and neb them when i have to.
SeanDavis, you know the trustpage too, don't you? They've talked about it there too alot, about premixing it.. And i know people there make a few for the next day and keep it cold but others don't as they are said it's not right...
I've always thought and think the leaflet(sp?) says it to that i have to mix it right before i use it.. I'll ask my pharmacy next time when i get there. It sure would be nice if i could make a few when i feel like it (would i ever hehe) and neb them when i have to.
SeanDavis, you know the trustpage too, don't you? They've talked about it there too alot, about premixing it.. And i know people there make a few for the next day and keep it cold but others don't as they are said it's not right...
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169">Link to a thread on CFtrust page</a>
This is the tread i just talked about.. Where people say they've been said it isn't right to premix it because it would be less effective, as it's unstable after mixing it.. But read it yourself.
This is the tread i just talked about.. Where people say they've been said it isn't right to premix it because it would be less effective, as it's unstable after mixing it.. But read it yourself.