Nebulized Tobi vs. Tobi Podhaler

[triples15]

Hi all,

Because I cannot tolerate Tobi (bronchospasms), and am allergic to colistin, the only nebulized antibiotic I can use is Cayston, and it doesn't give me the boost it used to. I hate not having any other weapons in my arsenal. :/

Anyway, I am curious if anyone who has problems with nebulized Tobi has tried the podhaler and if you had the same reaction? My doctor mentioned that he has seen some patients have success with the podhaler although they can't tolerate Tobi. Conversely, he said many folks have the same reaction to both. I'm trying to make a decision on whether or not to try the podhaler. If I do try, we are going to do my first dose in clinic and do PFTs before and after. I'm just nervous to do it because I always felt like nebbed Tobi set my lungs back and it took awhile to recover.

Anyway, would love to hear if anyone has any personal experience with this.

Thanks guys!!

Autumn

 

[MissAlexsBP]

Hi Autumn!

I can tolerate the Tobi, so I do not have the same experiences as you have with that, but I have done both the Tobi Podhaler and the nebulized Tobi.

I loved how fast and convenient the Podhaler was, but I had to watch a YouTube video to learn how to properly administer it first and I will say it is 'hard' to breath at broken capsules in in the Podhaler. My chest unfortunately felt wicked tight after doing the Podhaler, so despite the speed and convenience, I actually went back to the nebulized Tobi.

You may have a different experience with it though, because my lungs feel better after doing the nebulized Tobi, where your did not :/

If you have any questions, please feel free to reach out to me!

 

[jricci]

Hi Autumn,
I can’t tolerate Tobi and I’ve never tried the Podhaler either. I’ve also wondered if I’d be able to tolerate it. But just from reading people’s comments over the years, it does seem like chest tightness/wheezing is one of the main side-effects. It’s a shame you’re allergic to Colistin because it works very well--for me anyway. Did you have the allergic reaction when it was given IV? If so, I’m wondering if you would be able to try it via the nebulizer to see if you still reacted since very little makes it to the bloodstream when nebulized. I react with red-man’s syndrome with IV Vanc, but not when its nebulized. Although, it’s probably not the same risk since red man’s syndrome isn’t considered a true allergic reaction. Just thought I’d mention that.

I don’t have experience with nebulizing other antibiotics, but I’ve read that others have had success with nebulized Ceftazadime, meropenem, and amikacin. I’m wondering if you can try out one of those if the Podhaler doesn’t work out.
Good luck and I hope you find something that works.

 

[triples15]

Thanks ladies!

Yes it seems like, generally speaking, the podhaler causes more tightness/wheezing than Tobi. That's what makes me super apprehensive to try it. I think that J could be onto to something with trying something different. I might ask my doctor if we can think outside of the box.

J, unfortunately the reaction I had was to nebbed Colistin and it was scary. It was very strange because I had taken it a handful of times before, but that time my body said NOPE. I know there had been a patient death or two related to the premixed Colistin, and one of the first things my CF doc asked he got to the hospital the next morning was if I had premixed it or mixed right before the dose. Of course I had mixed it moments before the dose as directed. Anyway, I had been admitted overnight due to my fast heart rate, needing oxygen, an obscenely high white blood cell count etc. I went to the ER because I was having trouble breathing, spiked a high fever, and could barely move. Ugh. My baseline FEV1 was mid 60s at the time and the next morning when I did PFTs they were 40%, and that was after I had started feeling quite a bit better and had done my morning treatments. I was admitted for two weeks and still wasn't back up to my baseline when I left. I did eventually gain almost all of it back though, thankfully.

Anyway, all that to say that I am VERY nervous to try any new nebbed antibiotics, but at the same time really need something I can add to my current regimen. I'd love to hear from folks that might neb any of the antibiotics Jricci mentioned, and how you got your doc onboard to Rx them.

Thanks again gals!

Autumn

 

[triples15]

Hey, on a side note, what exactly is Bethkis? Is it the exact same formulation as Tobi, but just a smaller ampule size? I guess I don't get it. My doctor did mention that it may not be the Tobi itself that I'm reacting to, but rather one of the carrier agents (what's mixed with the Tobramycin to make the correct formulation). That's why he said it may be possible that I wouldn't react to the podhaler since it likely has different carrier agents. I'm now wondering if Bethkis is the same formulation or if I could give that a try. Hmmm.. many questions for my next appointment.

 

[dbtoo2]

podhaler is really great to get for traveling!

 

[benthyr123]

I can tolerate nebulized Tobi well...tried the Podhaler and ended up hospitalized because of bronchospasms. I haven't gone back to Tobi since. I do believe it is an individual thing since many people use it.