Comments | cystic_fibrosis: TOBI annoyances

beckyogg in cystic_fibrosis

TOBI annoyances

Jul 09, 2012 01:36

Does anyone else have trouble with inhaled TOBI? I've got a hoarse voice and scratchy throat, and last night I kind of had to work to breathe a little bit. The real scratchiness and discomfort are pretty much only immediately post-TOBI. I hadn't been on it in a couple years because I had been on Cayston, but I accidentally let my prescription lapse ( Read more... )

Comments 6

drowninglegion July 9 2012, 10:59:52 UTC

Oh, TOBI destroys my throat AND my voice, often for weeks afterward. I always somehow feel worse on TOBI than without it.

beckyogg July 9 2012, 17:17:31 UTC

I'm glad I'm not the only one. I was half-worried I had developed an allergy to it or something. I hate when meds that are supposed to make you healthy mostly end up making you feel like crap.

wunderkin72 July 10 2012, 20:03:20 UTC

Always. I have to use all my inhalers before I use it too, because I WILL have an asthma attack. By the end of a course, my throat is sore and I sound like I'm losing my voice. I HATE tobi. I hate any nebs for just this reason. They always make me feel miserable.

wander_lost July 12 2012, 00:19:36 UTC

I cannot tolerate TOBI at all, my FEV1 dips horribly and I feel like absolute shit on it. On top of the hoarseness abd such. I don't have trouble with Colistin. Haven't been able to get Cayston :(

amayasora2992 August 16 2012, 03:24:03 UTC

I DEFINITELY notice breathing differences with TOBI. I like to say I feel it working; I feel weight in my lungs like the smoke. I do feel like I'm working to breathe for a time after the treatment as well.

I sing in choir and after the first week I can't hit the high notes as well anymore when I'm on that. That usually peaks at about day 9 or so and then gets better after my body gets used to it.

Haven't found any solutions to these issues, unfortunately. :(

blueskitten September 8 2012, 04:37:16 UTC

This is interesting to see so many people affected by it, because my doctor told me that most people tolerated it well. I avoid TOBI like the plague since I sing professionally and it makes me so hoarse as to be unable to sing for about six weeks (4 weeks while I'm on it and another 2 weeks afterward). I get that heavy, irritated, smoke-in-the-lungs feeling from it, too.