Colistin

[marisalynn]

My FEV1 was down to 75% this last appt from 80% the time before. My doctor wants to start me on Hypertonic Saline, which I am doing now, and am having no problems it, except for a scratchy throat while taking it.
He already started me on Colistin once a day on the months that I am not on TOBI. I have not started it yet, because I am on my TOBI month, but I was wondering if anyone else on here is taking Colistin, and your experiences with it. I can't find a lot of information about it, which makes me wonder how common it's prescribed, or if it just hasn't been out for very long. Thanks everyone.

Marisa RN, 23w/CF

 

[marisalynn]

My FEV1 was down to 75% this last appt from 80% the time before. My doctor wants to start me on Hypertonic Saline, which I am doing now, and am having no problems it, except for a scratchy throat while taking it.
He already started me on Colistin once a day on the months that I am not on TOBI. I have not started it yet, because I am on my TOBI month, but I was wondering if anyone else on here is taking Colistin, and your experiences with it. I can't find a lot of information about it, which makes me wonder how common it's prescribed, or if it just hasn't been out for very long. Thanks everyone.

Marisa RN, 23w/CF

 

[marisalynn]

My FEV1 was down to 75% this last appt from 80% the time before. My doctor wants to start me on Hypertonic Saline, which I am doing now, and am having no problems it, except for a scratchy throat while taking it.
<br />He already started me on Colistin once a day on the months that I am not on TOBI. I have not started it yet, because I am on my TOBI month, but I was wondering if anyone else on here is taking Colistin, and your experiences with it. I can't find a lot of information about it, which makes me wonder how common it's prescribed, or if it just hasn't been out for very long. Thanks everyone.
<br />
<br />Marisa RN, 23w/CF

 

[Bridge76]

Hi Marisa
Colisten has been around for as long as I have been nebbing (at least 25years).In the UK it tends to be the first antibiotic you are given to neb(I think as people tend not to develop resistancy to it,so it can be used for a long time). I have never had any side effects from it. It's one of the least horrible tasting nebs,andI don't get scratchy throat or anything with it.

Goodluck- hope it works for you.

Sarah

 

[Bridge76]

Hi Marisa
Colisten has been around for as long as I have been nebbing (at least 25years).In the UK it tends to be the first antibiotic you are given to neb(I think as people tend not to develop resistancy to it,so it can be used for a long time). I have never had any side effects from it. It's one of the least horrible tasting nebs,andI don't get scratchy throat or anything with it.

Goodluck- hope it works for you.

Sarah

 

[Bridge76]

Hi Marisa
<br />Colisten has been around for as long as I have been nebbing (at least 25years).In the UK it tends to be the first antibiotic you are given to neb(I think as people tend not to develop resistancy to it,so it can be used for a long time). I have never had any side effects from it. It's one of the least horrible tasting nebs,andI don't get scratchy throat or anything with it.
<br />
<br />Goodluck- hope it works for you.
<br />
<br />Sarah

 

[semperfiohana]

i am on colistin every other month. i take it twice a day. once you mix the vial you use what ever your prescribed dose is then, then discard whatever remains in the vial. i can tell a difference when i'm off. i guess you could say it's my pa flaring up. they have me on colistin pretty much permanently because i don't tolerate tobi.

 

[semperfiohana]

i am on colistin every other month. i take it twice a day. once you mix the vial you use what ever your prescribed dose is then, then discard whatever remains in the vial. i can tell a difference when i'm off. i guess you could say it's my pa flaring up. they have me on colistin pretty much permanently because i don't tolerate tobi.

 

[semperfiohana]

i am on colistin every other month. i take it twice a day. once you mix the vial you use what ever your prescribed dose is then, then discard whatever remains in the vial. i can tell a difference when i'm off. i guess you could say it's my pa flaring up. they have me on colistin pretty much permanently because i don't tolerate tobi.

 

[AimeeSue82]

I used to do TOBI/Colistin alternating months until I started Cayston. From what I know Coli has been used to treat Pseudomonas for a long time. I've never had any side effects from it, but I also didn't notice it made much of a difference for me. I might as well have been taking a month off from abx nebs. It doesn't taste as bad as TOBI, but it does have a gross taste it's also very sticky, like TOBI. It gets clogged in the nebs if not washed right away. Once I started Cayston, I quite Coli all together. Hopefully you have better results than I did.
~Aimee, 27 CF with MRSA

 

[AimeeSue82]

I used to do TOBI/Colistin alternating months until I started Cayston. From what I know Coli has been used to treat Pseudomonas for a long time. I've never had any side effects from it, but I also didn't notice it made much of a difference for me. I might as well have been taking a month off from abx nebs. It doesn't taste as bad as TOBI, but it does have a gross taste it's also very sticky, like TOBI. It gets clogged in the nebs if not washed right away. Once I started Cayston, I quite Coli all together. Hopefully you have better results than I did.
~Aimee, 27 CF with MRSA

 

[AimeeSue82]

I used to do TOBI/Colistin alternating months until I started Cayston. From what I know Coli has been used to treat Pseudomonas for a long time. I've never had any side effects from it, but I also didn't notice it made much of a difference for me. I might as well have been taking a month off from abx nebs. It doesn't taste as bad as TOBI, but it does have a gross taste it's also very sticky, like TOBI. It gets clogged in the nebs if not washed right away. Once I started Cayston, I quite Coli all together. Hopefully you have better results than I did.
<br />~Aimee, 27 CF with MRSA

 

[ej0820]

I've been on it for about a year now. It doesn't taste that bad at all (it's easy to get used to) and is relatively quick to neb. You have to be careful not to let it bubble or foam when mixing it, because it takes forever for the bubbles to settle down in order to neb it. I know some ppl mix it, use their vest and other nebs, then by the time they're ready for it, it's settled. Aimee is right, it is VERY sticky. I've ruined a few nebs because I didn't rinse them right away, not to mention the nasty sticky droplets that permanently reside on my computer screen from coughing into my neb while on the internet, lol.

The only side effect I've experienced with it is a bit of reactive airways. I didn't notice it at first, but after being on it for about a month, I realized it made me feel kind of tight, wheezy and asthmatic right after using it. Simple solution: mix it with albuterol. I neb it with albuterol now and it's just fine. I, too, notice a difference when I don't use it.

Hope you start feeling better!

 

[ej0820]

I've been on it for about a year now. It doesn't taste that bad at all (it's easy to get used to) and is relatively quick to neb. You have to be careful not to let it bubble or foam when mixing it, because it takes forever for the bubbles to settle down in order to neb it. I know some ppl mix it, use their vest and other nebs, then by the time they're ready for it, it's settled. Aimee is right, it is VERY sticky. I've ruined a few nebs because I didn't rinse them right away, not to mention the nasty sticky droplets that permanently reside on my computer screen from coughing into my neb while on the internet, lol.

The only side effect I've experienced with it is a bit of reactive airways. I didn't notice it at first, but after being on it for about a month, I realized it made me feel kind of tight, wheezy and asthmatic right after using it. Simple solution: mix it with albuterol. I neb it with albuterol now and it's just fine. I, too, notice a difference when I don't use it.

Hope you start feeling better!

 

[ej0820]

I've been on it for about a year now. It doesn't taste that bad at all (it's easy to get used to) and is relatively quick to neb. You have to be careful not to let it bubble or foam when mixing it, because it takes forever for the bubbles to settle down in order to neb it. I know some ppl mix it, use their vest and other nebs, then by the time they're ready for it, it's settled. Aimee is right, it is VERY sticky. I've ruined a few nebs because I didn't rinse them right away, not to mention the nasty sticky droplets that permanently reside on my computer screen from coughing into my neb while on the internet, lol.
<br />
<br />The only side effect I've experienced with it is a bit of reactive airways. I didn't notice it at first, but after being on it for about a month, I realized it made me feel kind of tight, wheezy and asthmatic right after using it. Simple solution: mix it with albuterol. I neb it with albuterol now and it's just fine. I, too, notice a difference when I don't use it.
<br />
<br />Hope you start feeling better!

 

[marisalynn]

Thanks everyone! I feel a lot more comfortable starting on it now that I know of other CFers have had good experiences with it.

Marisa RN, 23 w/CF

 

[marisalynn]

Thanks everyone! I feel a lot more comfortable starting on it now that I know of other CFers have had good experiences with it.

Marisa RN, 23 w/CF

 

[marisalynn]

Thanks everyone! I feel a lot more comfortable starting on it now that I know of other CFers have had good experiences with it.
<br />
<br />Marisa RN, 23 w/CF

 

[Giggles]

I started Colistinin January and have had no side effects and it works really great on me! It does have a bad taste kinda like soapy barf but now I can not even taste it. I also get it from Foundation Care Pharmacy cause they premix it for you so there is no mixing of it on my own. I just open up the ampule and put it into my TRIO. It is great!

Their number is 1-877-291-1122, tell them Jennifer sent ya!

Good luck!

Jennifer 38 with Cf and CFRD

 

[Giggles]

I started Colistinin January and have had no side effects and it works really great on me! It does have a bad taste kinda like soapy barf but now I can not even taste it. I also get it from Foundation Care Pharmacy cause they premix it for you so there is no mixing of it on my own. I just open up the ampule and put it into my TRIO. It is great!

Their number is 1-877-291-1122, tell them Jennifer sent ya!

Good luck!

Jennifer 38 with Cf and CFRD