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Who has tried both tobi and colistin,
- Thread starter Daverog
- Start date
AbsintheSorrow
New member
The difference how? I've been on both inhaled drugs each more than once. If we're talking my personal preferences, I like the Coliston better. It's a little more work because you have to take the saline, powder, and sterile water and make the drug without causing too much foam. Plus when I do that one, I'm on it twice a day. But overall I react to it much better than the TOBI. If you have any specific questions, feel free to ask, and I'll check back to see if I can answer them.
AbsintheSorrow
New member
The Coliston makes me cough, just like the Pulmozyme (I have been taking that one every day for 11 years)m but didn't make me gag like the TOBI did. The saline was just a little extra, I don't think it's entirely necessary. And no, I did not boil the sterile water. We got it straight from the pharmacy. It comes in little glass bottles that you have to break the tops off of.
tobi is the more powerful one, it is apparently the most powerful inhaled antibiotic that exists (no i dont work for the company thats what my doctor told me!!!)in the UK ppl are put on colistin nebs when they grow pseudo, and are only transfered onto tobiwhen they are bad enough/if colistin doesnt seem to be working. medically speaking, the two have a similar long term effect, but in short term, tobi can increase lung function whereas you dont usually see an increase in lung function with colistin, it just does the job of maintaining it for as long as possible. i only know all this coz of asking my doc when i was transferred onto tobi!from a personal point of view, colistin used to make me very wheezy so i prefer tobi in that respect but i HATE the taste!! <img src="i/expressions/face-icon-small-wink.gif" border="0">
TOBI is great for clear up, but for me it irritates to the point my lung bleeds - either really bad timing or the TOBI causes it. I still use it rarely but only once a day as opposed to two. I also get a very scratch, deep voice. I am doing Colistin now, only once have I had a reaction such that my chest got so tight during the last few days of a two week treatment that I just quit, I couldn't breath. Mixing in the saline makes it easier, or as a carrier to get the Colisitin in the lungs. How do I say that? Creates more, so that it can get to where it needs to go, otherwise it would be gone real quick. female, 26/cf
to the person in the UK, we do that here in perth, australia too. im usually on colistin all the time and then switched to tobi when i get bad. i also find the colistin makes me wheezy. only bad thing about colistin is i cant use it with the pari pep because you end up sucking the foam up into your mouth, ew.Kylie
AbsintheSorrow
New member
Last I checked, Coliston doesn't come pre-mixed at all yet. You have to mix the powder, sterile water, (and saline?) yourself. And it can be a pain because if you do it too fast, it foams up and then you have to wait for it to calm back down. You aren't supposed to try and use it while it's all foamy.
I usually exercise 4-6 days a week on a bowflex machine and exercise bike. I had the doctor take off of the torbra because when I was on it and tried to exercise I would cough so much that I just could not do it. Some of you have said that the colistin makes you weeze, but will it make me cough like the tobra did, because even with all these meds I find that I feel my best when I am in shape and exercising regularly. For thos of you out there if you can exercise I would recommend the exercise bike, It has worked great for me. My doctor's have always stressed that the best thing that I could do for myself is get some cardio exercise, does your's say the same?Dave 29 w/cf from Ontario
I was on Colistin for years and years and then on Tobi for maybe 10 years straight. Now I'm on one month of Tobi, one month of Colistin. The Tobi makes my throat sore for the first few days of the month I'm on it. I generally feel better on the month I'm on Colistin, and it doesn't take as long to nebulize, so that's why I like it better, but the Tobi's ok for me too.Martha 29, CF
I've been on inhaled Tobi colistin and fortaz. The tobi seemed to work best for me,but i only use it once a day if i can get away with it ( no real bad infection going on) since i have had VERY bad problems with hemoptysis ( not due to the tobi though). The colistin always made me tight in the chest to where i had to use my albuterol before i used the colistin. I also notice the colistin doesnt do much at all for me, which my doctor says is common for some cf'ers. The inhaled fortaz seemed to be ok but i havent used it in a long time since it also makes me tight in the chest and after i had two embolizations due to bad hemoptysis in the last 2 years, i try to avoid inhaling anything that is irritating to my lungs. ~ Diane 39 / cf / diabetes / b.cepacia
Exercise has worked the best for me also. I am supposed to go on the TOBI, but it's so expensive, and my insurance at work will only cover 80%. I already spend $300 on Zithro, which is great. TOBI is starting to scare me a little. I take the Tobra, and mix it with a Sublutamol inhaler solution, made for nebulizers, and it cuts the coughing while taking it, and reduces the inflamation in the lungs, allowing the meds to do their job. I recommend talking to your doctor about that, if you find that it's making you weez. That's how it started with me!Cheers allAlison W/CF Cornwall, Ontario
Alison form Cornwall,Tobi, I do believe is Tobramycin and should be covered by the CF foundation. When I was on Tobramycin I just had to pick it up on my regular visits to the doctor and my doctor never wrote me a script for it.Dave 29/cf from St.Catharines Ontario.GO CANADA GO
I was on the original studies for inhaled Trobramycin back in 1986. It worked great for me at that point. In 1999 they tried it as a general routin for me and it made me cough like the devil. Not a productive cough, but it was actual bronchil spasm -- making my chest tight and wheezy. I think it ended up causing more harm than good. If this is the case for you, communicate that to your doctor. My doctor in one area had a hard time believing that, but when I went to a larger center they knew that it sometimes happens. I was then switched to Colistan and that did work for me. Doing the inhailed antibiotics is kind of inconvenient, but it does help maintain the lungs and staves off infections. The unfortuanate part is each person has thier own little body chemistry or whatever and what works for many, may not work for everybody.Take care,-H2