colistin nebulized medication

[anonymous]

my husband was just prescribed colistin for nebulizer treatment. I would like to talk to anyone else out there who has ever used this. He has been on Tobi and pulmozyme for a few months on and off now, but this colistin is a first. The parmacy gave us a vial that has to be reconstituted with sterile water, and then put in the nebulizer 75mg/1cc of the colisting reconstituted mix with 3cc sodium chloride. but the box specifically states for intramuscular or intravenous use only. The pharmacy is adament that this is proper and there isn't a better, or another form of the medication.
Does anybody else do their colistin this way too? I figured that it was going to be just like the Tobi and pulmozyme and come already prepared. Am I in error thinking that?

Anything is welcomed at this point,
thank you

Julie

 

[Magerly111]

I actually just got done a months worth of colistin. I liked it a lot, and I was concerned about the "IV usage only" warning thing too, but it seemed to help out a lot and it comes out as a mist, and if the dr. prescribed it, I couldn't see there really being a problem in it. It was a pain to prepare it yourself, but once you do it one time, you'll see how easy it is. Apparently this is the new antibiotic to use. I am also on TOBI every other month, and after using colistin, I hope my dr. wants me to use it more. I also use pulmozyme. My sister actually was jsut started on colistin too. I wouldn't be too worried about the IV thing though. If you do have a real problem with it, ask your husbands dr. about it. I plan on asking my dr next time I go visit him in a few weeks. Hope that helps you out some <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kim

20 w/CF

 

[NoDayButToday]

I too used Colistin in that way. We used a syringe to put the sterile water into the little bottle of Colistin powder, then gently mixed it together by 'swooshing' the bottle around. Then, we used the syringe again to transfer it to the nebulizer cup. Sometimes Colistin is very foamy in the nebulizer cup; that's why it's important to mix it together as gently as possible while still mixing it well enough so that all the powder is incorporated with the water. It is a little weird to use something meant only for injection or IV use as an inhaled solution, but I think it is safe- or else they wouldn't have us use it that way right (or hopefully they wouldn't)? It did make me a little tight, so look out for that.

 

[Joblazer86]

That is the correct way to use it as the others had stated. I have used it as well in the past. To avoid the foam build up while mixing roll it with the saline on a flat surface and that will avoid that problem. Before TOBI came out I use to have to do tobramycin that way but no saline b/c it was already in liquid form.

 

[Starfall99]

Like Joseph said, the IV Tobramycin used to be nebulized the same way before they developed TOBI as a nebulizer specific formula. It's possible as Colistin becomes more popular as a neb med among CF patients that they'll also develop a nebulizer formula for it, but for now that's the only way it's available. Gotta love being the guinea pig. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Don't worry though, plenty of us have been the "guinea pigs" for years now with this so it is safe and effective.

 

[anonymous]

Just to let you know i live in England and used to use coliston mixed with gentomicin and ventolin, but in the past six months they have bought out a vile just for nebulisation called Promixin which is still colomicin. But i still have to mix it with gentomicin and ventollin in the same way, dont notice it foams though! Just thought id mention it!

 

[anonymous]

I, too struggled w/ the IV use only statement on the box, but tried if for just under a month and didn't have adverse effects. It does get foamy, I'll warn you of that! I used to mix up 2 vials at a time & refrigerate the second one for next time & then it didn't seem to foam as much, because it was already "settled".
Also, I found that the old style "T" nebulizer cups didn't foam as much, as opposed to the PARI type ones. But I also wonder how much of the medication may be wasted using the "T" style nebulizers too? As expensive as it is, you certainly don't want to waste it! If you are really frustrated w/ the foamy-ness, you could ask your Dr. about the "T" style.
Like someone else mentioned, it made them feel "tight". I just can't tolerate inhaled antibiotics, they make me real short of breath, but I think I'm an exception, not everyone experiences this, but just wanted to tell you that in case your husband notices that. Good luck!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

hey guys <img src="i/expressions/face-icon-small-smile.gif" border="0">

thought i would chip in and add another UK perspective....

over here, when you first grow pseudo, you go onto colomycin nebs, not tobi. this is mainly because colomycin (or colistin) is cheaper. sad but true. TOBI nebulisers are actually stronger than colomycin, so if you can prove you are "ill enough" you can move onto tobi nebs.

some people prefer colistin, some prefer tobi. whichever works best for you great and stick with it <img src="i/expressions/face-icon-small-happy.gif" border="0"> personally colistin made me wheezy and i was almost relieved when i was moved onto tobi. but what ur describing sounds exactly like what i had for the first 16 years of my life, little bottles that you have to mix up with sodium chloride. and yes they do say that thing about intromuscular and introvenous, but dont worry, i inhaled them for years (as do most UK pwcf) and im fine! <img src="i/expressions/face-icon-small-happy.gif" border="0"> hope they work for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Thank you all for your input. I did check with the pharmacy again today and they confirmed everything I have read above. Thanks for taking the time to put your two cents in.

Julie

 

[Emily65Roses]

I'm a little late... but I've been on Coliston several times before. I use it inhaled and it worked fine. The fact that they don't come already mixed is because the med isn't stable. They can't mix it too far ahead of time and have it still work. There are IV meds that are similar (example.... Meropenem). It's a little more annoying, but it has worked for me before. As far as the pharmacy goes, if your doctor tells you or your husband to do it one way, trust that they know what they're talking about. The pharmacy means well, but they're more likely to know the more common drugs and the more common usages, so they may not have heard of inhaled Coliston, but it's still being used.

 

[anonymous]

Check with your doctor as to the correct neb for Colistin. Mine prescribed the PARI LC STAR, not the Plus, saying the STAR worked better. FYI

 

[Marjolein]

I live in Holland and have used Colistin nebs for as long as i can remember. All the time. The only times that i stop using it is like now, when i have my iv's. I've always gotten it just for nebulizing. I get a vial with the powder and one with saline together in a box, 80mg and 3ml. And i have to use that twice a day. When i feel that my lungs are getting worse and i'm not completely sure i need iv's yet i sometimes double my Colistin nebs to 160 mg 2 a day. Colistin is very common to use overhere. One of the advantages is that you don't get resistent to it very fast. The chance to that is much higher with Tobi (i don't use that), that's why you have to use that one month on, one off. I nebulize it with a Freeway Freedom and Ventstream cups.

 

[JazzysMom]

I LOVE Colistin. Once I got use to the mixing thing since it isnt user friendly like Tobi, but it worked wonders for me at a time that I thought there was mo further hope. It also doesnt have the unpleasant taste like Tobi making it much easier to tolerate. I know alternate Tobi & Colistin & dread the months of TObi.....I really do.

 

[becca23]

The injection thing is now big deal, before the days of Tobi, I use to nebulize gentamicin and tobramycin. The only problem that I have had is getting the insurance over the fact that it says for what ever use it says on the box.

 

[anonymous]

Hi,

I´m living in Germany. I do know the colistin for some years now and in the beginning we also had the one "for injection" and inhaled it. Now they have packages of it, where you can read "for inhalation", but thats the only difference I noticed...
I used the Pari Master and now the e-flow for inhaling.

Uli,43,Germany,cf/cfrd

 

[anonymous]

Holly has been on many inhaled drugs and she totally hates colistin. We mixed it as well, what a pain at first, I guess we are spoiled from Tobi and Pulmozyme. The foaming really gets on our nerves and it really made her feel funny and dry and she coughed so bad. Her favorite is Tobi! Cfmama

 

[JazzysMom]

I had minimal problem with the foaming of colistin tho it did exist. I shook it when mixing which is a big no no when it comes to the foaming; however, I would put it in the fridge after mixing a days supply & then let it sit after taking from the bottle & putting in the neb cup. The time it took to neb the colistin even with the foaming didnt seem anywhere near as long as the time for the tobi since the taste wasnt bad......I wasnt dreading it as much!