tobi pod inhaler

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drdanika

Guest
does anyone know what the deal is with the pod inhalers? are they offered in the states? I'm just curious why they aren't perscribed all the time. the neb version takes so long and my daughter really hates the taste. I just found out they make it in an inhaler, and I don't understand why they wouldn't prescribe that all the time???
 
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CrisDopher

New member
Anything here has to be approved by the FDA. This means we get safe(r), higher-quality medicine, though not as easily available as in other countries. Double-edged sword.

You may try getting compounded tobramycin, instead of TOBI. Slightly different. It's what I'm on.
 
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bigstar

New member
From what i know its approved in Canada already. Im anxiously expecting it here in Greece as well. My doctor today told me it will be soon available in Europe. I dont think there are safety issues but it has to do with the existing patent of Tobi and other legal issues. Im just saying...
 
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lizlas

Guest
It was on this forum, a few months ago that I even heard there was a Tobi Podhaler, let alone that it was approved in Canada...Canada is usually the last to get anything new improved....lololol I havent tried it yet, maybe next week. Tobi and plain tobramycin really irritate my throat and chest, so I assume podhaler may do the same....
However, when it is approved in the States, its going to be the same Tobi podhaler that s been approved in Canada and other countries. It wont be a safer higher quality version.
I hope you get approval soon.
 
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Keelyisbored

New member
Hi, over here in Ireland I got it and tested it. Got to be honest, hated it. It just put pure powder into my mouth and caused me to cough my face off. It was like drinking baby powder.
 
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bigstar

New member
Im so sorry to hear this! I have many side effects from Tobi not to mention the time waste in sterilizing everything! I had my expectations high upon the podhaler!
 
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stephanied008

New member
HI!

I was recently put on the pod hailer. I had been on two rounds of tobi through the neb and hated it. It took so long especially having to do the flutter first. I was told that it would take a half hour but it was usually around the 45 minute mark twice a day.

The pod hailer costs as much as the neb version. I had to take my first dose at the clinic because it causes dialation. I coughed so much. My lung function is currently sitting at 96%. So I took the pod hailer home. Besides the flutter it takes me no longer than 5 minutes. As keelyisbored reported it is like inhailing baby powder. The taste is awful too.

Now when I say I coughed... i coughed and coughed. I still do and its been a week in. My voice has changed and i feel like there is a ten pound weight on my chest. The first night after two doses i was contiplating going to the ER I was wheezing so bad. I dont normally wheeze, only when Ive been playing soccer and out of shape. Ventolin makes me very anxious and my heart rate sky rocket. I resorted to using Ventolin, two puffs which helped. I also took in about 2 cups of strong cold coffee. Although my heart was racing it was enough to relax my coughing and finally sleep.

Its not as awesome as i thought it was going to be. Its definatly ALOT more convient but im not sold on the after effects. Like I said Ive been really fortunate with my lungs and this makes me feel like im all clogged up, constantly feel like i need to clear a large amount of phlem.

If anyone else has been on it I would like to know what your experiance has been and what you have done to help.

Cheers!
 
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Daverog75

New member
It is available in Canada and I tried for one month and was able to deal with a little more coughing while I was taking it. The second month I took it I only made it through 2 weeks and had to stop taking it because it was just irritating me too much.

I can't seem to tolerate these inhaled antibiotics all them really bother my airways and make it extremely difficult to breath.

Dave 37 w/cf
 
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bigstar

New member
I ve been waiting so long for this and im so dissapointed! I have to agree though that all inhaled antibiotics make me cough to death. I feel that their side effects are more than their benefits.
 
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Evilee

New member
From My CF Doc in clinic yesterday: "The Tobi pod is on the bench with the FDA right now, we should be getting a decision written from them in August about it." He thinks that this means we will probably see it by the end of the year.
 
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CyrilCrodius

New member
I tried it for a month. It goes very well, until you hit a low. The podhaler, being powder, will not provide you with the very sought after relief that the nebulized form might provide you with and might actually make things worse, right when you need something that only makes things better. So it works well when you're doing well, but when you're doing no so well, you find yourself wishing it was in nebulized form.

For me, anyway.
 
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LittleLab4CF

Super Moderator
I wonder if inhaling meds could be done by direct vaporizing. Many of the antibiotics and the like have fairly low vapor points. Anybody have any thoughts? Depending on how neutral the vapor would be, it could be either extreme as far as taste but a few (4) inhalationd could deliver the most where it will do the best. I am wide open on this, antibiotics taken orally are hard on everything from altering my taste to my GI tract, liver, kidneys etc. I'm game unless somebody knows a specific potential danger?
 
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alegris

Guest
I'm in Canada and just started my first round of Tobi with the Podhaler. I've tried to do nebulized Tobi in the past but it caused so much chest tightness and difficulty breathing that I had to stop. I'm seeing the same thing with the Podhaler but thought I would give it a try because it's so so SO convenient. My chest is so tight when I do Tobi that my lung function drops like 10%. My question is do you think it's worth it? Struggling through a month of difficult breathing, not being able to exercise, being short of breath, etc. Is the benefit at the end of the month really worth it? I've never been able to do Tobi consistently one month on and one month off. I'll be able to do maybe one or two rounds of Tobi a year. I'm having a hard time believing it's really helping but my doctor keeps pushing it. In my mind I can't see how laboured breathing for an entire month is really helping my overall health. Any thoughts or opinions?
 
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Jana

New member
stephanied008 said:
I was recently put on the pod hailer. I had been on two rounds of tobi through the neb and hated it. It took so long especially having to do the flutter first. I was told that it would take a half hour but it was usually around the 45 minute mark twice a day.
Click to expand...
 
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Jana

New member
Sorry--apparently, I don't know how to work the quote thing. TOBI nebs shouldn't be taking this long. Are you using the correct nebulizer? Only certain ones are approved for use with TOBI. If you're using the correct nebulizer, I would say there's a problem with your compressor. It should take around 20 minutes.
 
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