Let's try this one more time..... Colistyn vs. TOBI

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ladybug

New member
My apologies for posting this THREE times... I kept posted in "teenagers". Here's the copy/paste of my question.....


Hello. I was put on colistyn several months ago because I had terrible coughing fits for several days after starting TOBI... I just could not handle it! TOBI also made me extremely short of breath for the entire time I was on it. Plus, it did NOTHING for my pft's or hospital visits.
My doctors thought it was odd I had such a reaction to it, but started me on colistyn nebulized twice a day for 28 day cycles (just like TOBI) and I tolerate it much better. I'm just wondering if anyone else out there has had this experience with TOBI and also if anyone is on colistyn therapy through a nebulizer and what their results/experiences with it are? I only know of 1-2 other CFers on this regimine at our clinic. Thanks for sharing!



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Sonia

26 w/ CF
 
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anonymous

New member
Sonia,
I had the same symptoms w/ TOBI, repressive shortness of breath and increased cough. I got off of TOBI and felt better, then tried Colistin. Then 3 days into the Colistin, I noticed this SOB creeping back in, so I took myself off of Colistin and haven't been brave enough to try it again! I will, though, just to see if it effects me that way. My FEV1 is 30, though, so these meds may not effect others w/ better PFT's the way they do me.
 
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Lynn

New member
I was on Colistin for 28 days on then off. I tried this for a couple of months but I was frustrated with having to mix it my self...and it was way too foamy in my nebulizer! This was frustrating me to the point that I did’nt want to do it anymore and I would slip out of my routine....so My doc put me on Tobi. I’m currently in the middle of the 4th month ON the Tobi, I don’t really find any big side effects, only ringing in the ears a couple times a month. It’s alot easier to keep my routine with Tobi because there’s no mixing and it’s not foamy in the pari mask. There’s no change in my FEV yet, it’s currently 42. I’m hoping to see a change by December. When should I see a change?
 
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anonymous

New member
I'm on colistyn for 28, then TOBI for 28. Anyone else do that? My FEV1's are around 30, I have b.cepacia and on the lung tx list. We've noticed a reduction in foaming if we gently roll to mix colistyn. It can be prepared ahead, which also seemed to help it foam less. It is a pain to mix up, TOBI is so much easier to do, but seem to get better results from colistyn.
 
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princessjdc

New member
Hey,
Im on Tobi, well Im off of it right now, Ill be starting back on it next monday. Im 28 days on and 28 days off. I enjoy the 28 days off. I have no problems with it except for the occasional ringing in the ears. I've been on Tobi for a good year and a half now. My doctor first had me try collymycin, you had to mix that stuff yourself which is a big pain in the neck to do especially for two times a day. I didnt like collymycin because it made me short of breath. I couldnt walk very far without breathing hard. and I just plain hated it. Tobi is a lot better tho.

Jennifer prettygirljdc
 
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anonymous

New member
Sonia

I had the same problem with tobi, made me cough twice as much. I ride an exercise about 4 - 6 times a week, but when I was on tobi I would cough so much when riding the bike that I had to stop. Just couldnt' do it. The tobi never helped my pft's in fact they went down. I have not been put on colistin yet but my doctor has mentioned it. If I am put on colistin and it prevents me from exercising again I won't hesitate to stop taking it.

Dave 29 w/cf
 
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