Colistan..what do you think of it

[anonymous]

Curious of those who are on Colistan??? I am on Tobi, Pulmozyme and Xopenax and as soon as I am done with my Tobi 28 day treatment, within a week I am coughing more, more congested and tired. I have tried to just suck it up but I think I am going to have to break down and do Colistan on my off months of Tobi. I have been hesitant cause my doctor says you have to mix the solution with saline and use needles etc. It is not user friendly like the Tobi, Pulmozyme and Xopenax, which all come in ampules that all you do is twist off the cap. I also heard Insurance companies are sometimes sticklers about Colistan. My doc says there are no other drugs to inhale with the nebulizer, that Colistan is the next step. Is that true???? Sorry if I am spelling Colistan wrong!

Anyways, those of you who are on it how does it work for you? How long does it take to inhale? Hopefully, not as long as Tobi. Do you find it works well when not on Tobi.

Any info anyone has would be great!!!

Jennifer 33 yrs old with CF, CFRD and Osteopenia

 

[Emily65Roses]

I myself do not take TOBI. But I've taken Colistin several times. It's less user-friendly, yes. But it's not dangerous to mix, or particularly difficult. You just have to add water to powder and then sometimes add some saline. It only took 15 minutes or so to inhale when I used it, and I was doing it twice a day. You can't mix the Colistin a few days ahead of time, but you can mix it a few hours. So normally at night, I'd mix two of them, and then I'd have my night dose, and my next morning dose ready so I wouldn't have to wake up earlier to get it all together. It seemed to help me too. I'd say it's worth a try. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

Jen,

Mark has used colistin a handful ot times. It is a bit inconvenient to mix but that's all the "issues" he had with it. You can actually get a needless attachment to puncture the vial with and then you just use a needleless syringe system to inject the saline and sterile water into the vial. You can also use needles, but we have found the needless system is much more convenient.

Some doctors recommend just saline, but our doctor recommended we follow the instructions contained within the box which is saline and sterile water. It says to put the saline in the vial and mix it, and then put the sterile water in the nebulizer cup itself, NOT in the vial. I believe it helps alleviate the side effects (a big side ffect is coughing attacks). I can give you the exact break down if you are interested but It should be in the instructions in the box you get.

It takes just about as long as tobi, maybe 5-10 minutes less. Tobi was not clearing up marks infections and he was becoming resistant to cipro so the doc tried the colistin and it worked wonderfully. Apparently it can give some people sever coughing attacks (it is just one of the side effects as every medication has) and the attacks can start from a few minutes into the medication up to 1 hour afterwards. If you have the "coughing attacks" from colistin, you will always have them-if that makes sense. So if you try it the first time andyou have no problems, it should/probably will always be that way. Our doctor recommended that Mark have someone home with him the first time he tried it, just in case that happened. When he felt great and had no reaction to it, he was in the clear.

You want to mix it anywhere from a few hours to an evening before you use it because you have to "roll" the vial to get it all mixed up. Then it gets frothy sometimes which can be a pain in the butt to get it out of the vial. We usually mixed Marks the night before or early in the morning (about 1 hour before use).
Good luck!!!!!

 

[anonymous]

my gf is on it the month she is off tobi and it helps her alot... you never know what its gonna do to you untill you try it. give it a try and see if it works for you.

 

[anonymous]

I can't tolerate TOBI, but do colistyn every other 28 days just like TOBI. It is a pain to mix, but I think it works well to loosen things up. Also, it only take me 5 minutes or so. I only mix it with saline, as that's the way I was told. I also was told you can mix up to a few days' supply and store them in the fridge, so that saves me time. Have those of you who only mix it right before been told that you can't mix it early and store it in the fridge? I think in the directions it also says you can store reconstituted solution in the fridge for up to XX days. Correct me if I'm wrong. I've known a couple people who mix it ahead of time.
Hope this helps!
Sonia

 

[Lilith]

Hi, Jennifer

I used to be on Tobi all the time, and then my doctor switched it to one month of Tobi and one of Colistin. When I transferred to the adult CF clinic, my new doctor took me off of Tobi altogether and now I'm on just Colistin. I usually do it twice a day unless I'm sick, and then I bump it up to three times a day. Emily's right when she says that you can't mix it and let it sit, but I was told that it would last refridgerated for three days maximum, so I usually make six at a time and store them in my med fridge. Yeah, it is a pain in the butt to deal with the syringe every time you have to make a new batch, and fooling with needles is certainly not something you really feel like messing with first thing in the morning when you have to do a treatment, but it takes much less time to inhale than the Tobi. I use a Peri nebulizer cup and it only takes me about 15-20 minutes.

As far as if it's helped me more than the Tobi, I've become somewhat resistant to inhaled Tobi (at least my major bugs have), so Colistin was really my only choice. Usually when I'm ill my doctor perscribes IV tobramycin and the more frequent use of the Colistin, and that usually rounds out all of the bugs. It's got a funny aftertaste, but other than that, I like it better than the Tobi because it doesn't take as long to do.

Okay, I've rambled enough. Hope you find this somewhat useful ^_^