New member
I am looking forward to it, too.

That said, my doctor is skeptical. Apparently, it's been out in Europe and Canada for a while and they have data about people who have been on it for a while and a lot of people are having trouble tolerating it (many claim it's like inhaling baby powder) and of those that can tolerate it, many are seeing a decrease in lung function vs. staying on regular TOBI. I guess it comes down to what works best for you: having higher lung functions but being tethered to a machine for over an hour a day (for two treatments) or having lower lung functions but not having to spend so much time on it.


You realize it's approval was delayed because at first they weren't even sure it worked right? Now all of a sudden here we go. It causes major airway spasms and delivery to deep down is questionable. Why not just get a trio from Foundation Care with compounded Tobramycin and it takes just as long as the Pod Haler.


New member
I'm on the podhaler. I've never been on any other form of tobi. I have an asthmatic component to my CF. I upped my dosage of Flovent and ventolin with the podhaler to deal with the side effects.


I just finished a week of TOBI Podhaler with no adverse affects. It worked wonders in 7 days! I must have been really fighting pseudomonas for a while, because, it's been a really long time since I've been this clear. Secretions are clear and watery! Great News! NOW if only I can get my insurance to cover their part, so the manufacturer will pay the copay. Insurance said it's a "plan exclusion". However, I can't take nebulized TOBI. It gives me severe asthma symptoms. Dr. is appealing. I'm praying. I would love to hear if others have had good results, too.
I have been doing the Tobi podhaler for over two weeks now. I have noticed I am more short of breath than usual, feeling tight, and coughing a lot more like I need to clear something but there is nothing there. I don't have a follow up appt until September. It will be interesting to see if my pft go up or down. Not sure what I think of it yet since I feel worse after taking it than before but my doctor won't prescribe anything else. Has anyone else tried it yet and what were your results? Anyone do it more than 1 month yet. Does it get better?