Tobi

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occupyjapan

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.
 
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knowitall

Banned
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.
 
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LookingforPeace

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.
 
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rtorres25

Member
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.
 
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cheerfulpuppies

Member
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?
 
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