Tobi podhaler

[Jellybaby]

For people on tobi podhaler!
Have any of you had the side effect where it makes you really tight all the time and makes your voice go really hoarse!
No matter how much ventolin I take I'm still tight and I feel worse when I'm on my month on it but doctor had advised not to change

 

[alegris]

I get the same thing with both nebulized Tobi and the Tobi podhaler. I think it's the drug itself more than the form it's administered in. I also have asthma and like you it doesn't matter how much ventolin I take. My chest gets so tight that I have to stop taking it altogether. I don't think I've ever made the full 28 days. When the podhaler came out my doctor suggested to give it a try but it was the same as regular nebulized tobi. Try explaining again to your doctor. I don't think it's exceptionally rare to have that side effect so he should listen to you. And there are alternatives out there (Cayston I think is one of them).
Good luck!

 

[triples15]

I haven't tried the podhaler, but nebulized Tobi does the same thing to me. Extremely hoarse, tight chest, wheezing etc. It's awful. It causes severe bronchospasms, despite pre and post dosing of albuterol. At first it took days or weeks to have this reaction, so I toughed out the 28 day treatment. Eventually it got to the point where after a dose or two I could hardly breathe. So, needless to say, I haven't done Tobi in years. It's really unfortunate for those of us who can't tolerate it (there are many of us) because it takes one efficient med out of our arsenal to fight this crap. Ugh.

If your reaction continues or gets worse you'll have to push the issue. One thing you could do is have PFTs right before you start your Tobi cycle, and then say repeat them after a week on it. If you are having reactive airway issues your PFTs are likely to have dropped dramatically. That should be enough evidence to show the doc what it is going on.

Good luck to you and I'm sorry you are experiencing this!

Take Care,

Autumn 32 w/CF

 

[Jellybaby]

Thanks guys for the replies!
Im month on toni month on cayston and I love cayston.
Im due to go on Tobi again soon though :'( oh it drives me nuts because I do loads of singing and I sound like a man when Im on tobi!
so maybe ill try it this time and see how it goes and if its really bad I might just have to go in and demand my own way hahah!
or try having pfts before I start and then when im on it thats a good idea! Thankssssss

 

[bigstar]

Had the same problems! I had terrible reactions to that med but my doctor insisted on keep taking it. I guess she thought it wasnt so bad because my PFTs werent too lousy but not very good either. Anyway it made my life miserable. A month ago i started Cayston. Hallelujah! Thats how normal people live! No coughing no voice issues no no nothing. I dont know if its equally helpful in fighting PA but even if it isnt, Tobi had more side effects than benefits at least for me.

 

[triples15]

Yes, Cayston has been my saving grace as well! Love it! I'm a little concerned though because I experienced a little tightness and shortness of breath toward the end of my last cycle. I've been taking it for 2 years now and I'm worried I'm developing the same reaction to it as I do to Tobi (and Colistin). I due to start another cycle soon and I've got my fingers crossed that those symptoms weren't related to Cayston!

 

[LookingforPeace]

I had similar experience. My docs suggested I increase my Flovent and ventolin. Since then I've switched to Pulmicort.

So my regimen is: 2 ventolin, 28mg tobi, 2 symbicort, 3 pulmicort and then 2 more ventolin.

So I've added one inhalation of pulmicort and 2 ventolin and it solved the problem for me.