Chris040893
New member
My Son is currently in for a tune up and his doctors are considering putting him on Bronchitol. Has anybody used this at all and had positive results?
Bronchitol
- Thread starter Chris040893
- Start date
Hi Chris!
I'm assuming you are not in the US? You're probably not getting responses because Bronchitol isn't approved here yet.
I did the clinical trial and I liked it. My lung function stayed the same, well, actually it went up a percent or two while I was on it. It could have just been a good spell, I suppose, since there was no drastic improvement. But I considered it beneficial and felt pretty good while on it.
I think it would be worth a try for yours son! The powder is a little irritating but after the first puff or two it's gets easier.
Anyway, good luck and I hope your son is feeling better soon!
Autumn 33 w/CF
I'm assuming you are not in the US? You're probably not getting responses because Bronchitol isn't approved here yet.
I did the clinical trial and I liked it. My lung function stayed the same, well, actually it went up a percent or two while I was on it. It could have just been a good spell, I suppose, since there was no drastic improvement. But I considered it beneficial and felt pretty good while on it.
I think it would be worth a try for yours son! The powder is a little irritating but after the first puff or two it's gets easier.
Anyway, good luck and I hope your son is feeling better soon!
Autumn 33 w/CF
Chris040893
New member
Thanks Autumn. Good guess we are in Australia, I think the drug was developed here. Little concerned about the irritation aspect as Ben has had problems with hemoptysis and last November had an embolisation to stop the bleeding. He can't pulmozime or saline as this tends to cause bleeding. Hopefully the bronchitol will help.
Chris father of Ben 17 w/cf
Chris father of Ben 17 w/cf
Hello again Chris!
You're very welcome. I have pretty reactive airways and can't tolerate Tobi or colistin. I didn't have a problem with Bronchitol in that respect, so let's keep our fingers crossed that it's not super irritating. The irritation I experienced was more like a tickly/choking reaction when it hits the back of your throat. Not so much in my lungs, and it only happened with the initial couple of inhalations of each dose, and then I could inhale the remainder of the capsules no problem. I'm not sure if they changed it after it was approved, but when I was on it, it used an "actuator" to pop the capsules and then you sucked the powder. It was 10 capsules twice a day.
I had never experienced hemoptysis when I was in the study, so I can't say whether it exacerbated that or not. I have had a couple episodes of hemo now, but it was at least 2 years after finishing the study that it started, so I know it's not related.
Anyway, sorry, hope that helped at all!
Goodluck, and I really hope it helps Ben!
Autumn 33 w/CF
You're very welcome. I have pretty reactive airways and can't tolerate Tobi or colistin. I didn't have a problem with Bronchitol in that respect, so let's keep our fingers crossed that it's not super irritating. The irritation I experienced was more like a tickly/choking reaction when it hits the back of your throat. Not so much in my lungs, and it only happened with the initial couple of inhalations of each dose, and then I could inhale the remainder of the capsules no problem. I'm not sure if they changed it after it was approved, but when I was on it, it used an "actuator" to pop the capsules and then you sucked the powder. It was 10 capsules twice a day.
I had never experienced hemoptysis when I was in the study, so I can't say whether it exacerbated that or not. I have had a couple episodes of hemo now, but it was at least 2 years after finishing the study that it started, so I know it's not related.
Anyway, sorry, hope that helped at all!
Goodluck, and I really hope it helps Ben!
Autumn 33 w/CF