I am on the new TOBI study and love it!!!

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PLUCKY

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> OKay so I got on the study about 3 weeks ago and I was one of the lucky ones to get the new inhaler TOBI. I must say this is great and I hope it passed approval quickly after the study ends. If anyone has any questions I would be more than happy to answer.

Plucky
 
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anonymous

New member
Ii will eventually take part in Germany. Did they already test you in any way to see if it works?

Uli,43,Germany
 
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JustDucky

New member
Wow, that sounds sooo much better than going through those long nebulized TOBI treatments! I sure hope that the study works and we can ditch those nebs. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Fingers crossed!
 
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PLUCKY

New member
Hey all didn't expect so many post so fast. Ok Ui Yes I am in the US. and Yes they did and still continue to test me. I go in about once a week and I do a treatment there and wait 30 minutes and then go blow in the machine.

OKay to explain the treatment it is not really like servent, ventolin or any of those. You get the pills (capsules) and a special inhaler. You put a pill in the inhaler and push a button on the end of the inhaler. This button pushes down a needle which pokes a hole in the pill. You then take one deep breath and hold it for 5 seconds you then take another deep breath and hold it for another 5 seconds. You then check the pill to make sure all of the powder is out of it. If not you put back in and take another breath. You have to repeat this with 4 times. (4 capsules= 1 treatment) So basically you have 8 capsules a day. So no it is not as easy as breath in breath out your done but it sure the heck beats a nebulizer. You can take it with you and do it pretty much anywhere. It only takes about 3 minutes or less for me to do one complete treatment.
From what I understand I am one of the first to get accepted on in the study. You have to be able to grow citromonus (excuse me if I spelt that wrong) and your pft's have to also be at a certian level.

Anymore questions I am happy to answer
Also I hear pulmozyne is looking into doing something similair
 
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PLUCKY

New member
They are in low 60's high 50's. I think your center has to be approved for this but I am not certian. Good luck to you asking about it. I believe you can't be to low on your
PFT'S but you can be to high to qualify. I honestly can't say if it is as good or better than the nebulizer because I have only been on it for 3 weeks, but I believe I get to do 2 to 3 complete cycles with it.
 
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PLUCKY

New member
I am use to it <img src="i/expressions/face-icon-small-smile.gif" border="0"> every since I was young I wish I could name them all.
If I get sick don't get it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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