I am doing inhaled colistin & am thinking it may cause me to be short of breath, does this sound like a side effect that anyone else has experienced? Obviously, with CF, shortness of breath can be a reality, so it's just so hard to tell if it's from the colistin or not.<img src="i/expressions/face-icon-small-confused.gif" border="0">
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colistin
- Thread starter anonymous
- Start date
DEFINITELY can; i had no idea that was what was making me feel wheezy and giving me headaches until i stopped using it and switched to tobi which for me is much better! funnily enough, most people i know are the other way round and have more wheezy probs with tobi but there you go! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I also had the problem with colisitn and tightness in the chest. My doctor told me to use my inhaler right before i inhaled the colistin and it did seem to help. I dont use the colistin anymore because , it didnt do anything for me, which my doctor said is also common in some cf patients.~Diane 39 / cf / diabetes / b.cepacia
I just started Colisting on Friday (June 4). I used to take Tobi but it caused so much upper airway inflammation and bad laryngitis that I had to go off of it. Also, my bugs were resistant to Tobra but not to Colistin.Well - the Colistin immediately started making me wheeze and feel really tight and irritated. My peak flow dropped drastically (from 370 to 290) and I felt very short of breath. That afternoon, I got out a few very productive coughs and felt ok for awhile, then shortly before my evening treatment, felt bad again. However that night - my peak flow went up to 380 - the highest that it's been in a year.Saturday had the same problem - had a lot of trouble walking around. But that night - I got out more crap from my lungs then I have ever seen. I felt amazing for about 2 hours, but then everything tightened up again. Peak flow was 330.Sunday - the side effects weren't quite as bad, but I got really short of breath during the evening. Peak flow was only 300.Today - I still wheezed while taking the meds but wasn't quite as tight the rest of the day. I look like crap though - big dark circles under my eyes like I'm not feeing well, and I don't feel great. My cough on the Colistin is very different - I get all rattly and the coughs suddenly "pop" out and my sputum looks very different - some of it is white - I've never had white and my parents said that is new sputum that is just starting to get infected - so it's a good thing.Anyway - I'm just wondering if the side effects go away and the wheezing and tightness stop. My assumption is that I feel like crap because it's actually going in there and killing the bugs which is causing my airways to block up as the stuff moves out. My docs haven't said much to help other than keep with it if I want to. What are you experiences with it?Thank you!Piper
Just an fyi - my pharmacy sent me the Pari "Star nebulizer which is slightly different than the most of us use for Tobi and such - they sent it specifically to use with the Colistin - I tried it this morning and had VERY minor side effects from the Colistin - just a teeny bit of wheezing for a few minutes during the treatment - otherwise I felt fantastic. Piper
AbsintheSorrow
New member
Some people don't work well with the TOBI, and others don't work well with the Coliston. I personally am a Coliston fan over the TOBI. The TOBI never sat well with me, but I had no trouble with the Coliston, and it usually helped. But from what I've heard others say, Coliston can have side effects that make no sense for CFers, shortness of breath and wheezing. Heh. It just depends on the individual. <img src="i/expressions/rose.gif" border="0">
i was taking inhaled colistin for a few months when i was younger, and it didn't do much for me. last year my new doc suggested that colistin through iv would work now that i'm older. the first night they tried it through iv, i developed a reaction and ended in up ICU. both my kidney's shut down and i went on dialyses. my lungs also filled up with fluid and collasped. as you can tell i wasn't happy. any way, the hospital had to do a report on my situation and it came to their attention that pharmacy had sent to the ward i was in, colistin for nebuliser's and not colistin for iv's. colistin for neb's is a much stronger drug than iv colistin. the doc's have told me that cause of what happend i couln't take any kind of colistin from now on. that was november last year, now i have both my kidney's back on track but i'm still trying to get my lungs back to what they were like before. it's hard but it's happening slowly. any way just be carefull with what they give you and don't be affraid to ask about the drugs.