trouble with TOBI

[onlyoneloveinmylife]

anyone have trouble with tobi. for me like a week into my 28 days
on tobi it feels like my lungs are inflamed and it gets hard
to breath. anyone else have this problem, and if so any idea whats
causing it?

 

[my65roses4me]

<span style=" font-size: x-small;">Hi Tom my name is Khristina. I
took Tobi for about three years and have quit it since. I had all
kinds of different problems from it. I would feel tight from it
right away which caused me to cough hard for a while after the
treatment. I have prob with hemoptysis and the Tobi made it worse.
So you aren't the only one that has probs with it.<br>
Khristina 31yr old cfer

 

[HairGirl]

I also have stopped Tobi, haven't done it in three years now, it was contributing to my hemoptysis problem.

 

[anonymous]

I had the same problem and had to stop. I had taken it for like 7 years before the problems started.

John

 

[anonymous]

never used the stuff personally

 

[blindhearted]

I have taken Tobi for many, many years. Basically since it came out on the market. In the past few years, specially the past two, I have noticed my tolerence to Tobi has gotten worse. My throat gets sore and horse. Lately my lungs seem tight and its harder to breathe. I even do albuterol everytime with Tobi and it still doesnt seem like I am getting relief. I actually believe its making my lungs worse. Its making everyday life a little harder feeling tight in my chest like this. So you are not the only one. I am actually thinking about calling my CF Doctor about it what it is doing. What do you guys think? Call now (since I'm on it) or wait until I go to clinic in Dec?

 

[kybert]

i have the same problem too. as with others, ive never had problems with it in the past. its slowly getting worse. this has happened with colistin too but to a greater extent.