TOBI & Irritation

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blindhearted

New member
I was wondering if anyone has throat problems with TOBI? Each month for me varies. It causes my throat to feel scratchy which in turns causes me to have awful coughing spells that are so hard they causes/intensify headaches and can enduce vomitting (sorry if that's gross) and/or I will become horse to the point I completely loose my voice and I have to write down anything I want to say. It can also cause me to loose sleep from coughing because when I get like this, anything around my neck feels like its choking me, even if its loose. I have tried Throat Drops, Cough Drops, Chloaseptic Spray, drinking hot tea with honey and lemon, keeping a bottle of water by the bed, taking cough medicine (which I try not to do since it can cause its own problems). But other months I am fine and have no problems. I am on every other 28 days, it takes me the off 28 days to get back to normal, but seems like the longer I am on TOBI the worse the problem gets and the longer they last.

Does anyone else have any of these problems? Or suggestions on what I can do about it? I am about to go crazy because of it.

Thanks
 
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JazzysMom

New member
There ae many people that cant tolerate Tobi. Although common side affects is dry throat & hoarseness, it sound slike your problems are much more than that. I would suggest talking to your doctor about taking a break from it or maybe finding an alternative especially if its for maintenance & not to fight an actual infection. It kind of defeats the purpose if it takes you the whole following month to feel better or yourself & by then its time to start the next round!
 
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anonymous

New member
One thing I noticed is that it made me feel very, very short of breath. When I told my doctor that the quality of life I had for those 28 days I took TOBI sucked, we agreed that maybe it would be in my best interest to discontinue use. I hate that, because I think TOBI is a good medicine, but all of us can't tolerate it.
 
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anonymous

New member
I have the same problems w/ Tobi...hoarse throat to the point i lose my voice, coughing, but the throat makes its hard to cough stuff up, etc. I dont use Tobi because of it.

Caitlin
 
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JustDucky

New member
Hi Danyelle, yup, the first week I do get the throat irritation and hoarseness, but usually it gets better by the second week...I guess my body gets used to it. I also suck on lozenges, suck on ice pops...The hoarseness I just with until it gets better. Sometimes feels like I am inhaling sandpaper at first. I am actually going through a cycle of it now and am in my second week, I feel better and the hoarseness is almost gone as well as the general irritation. Hugs to you, I hope it gets better for you soon. Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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blindhearted

New member
I have decided to lay off the TOBI for a few days...after the morning dose, I had coughing fits and I wasnt able to get much medicine in my lungs, so I doubt if its doing much good if I cant even inhale it right. Plus I am so sore and tired from all the coughing spells. So I am gonna lay off until the holidays are over and maybe call my CF Center to tell them about it. Maybe they will tell me to lay off a few months and try again or give me something to help. Jenn, thanks <img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope a few days rest will make me better, but when I first started TOBI I would get better as time went on, unfortunately I get worse now <img src="i/expressions/face-icon-small-sad.gif" border="0">.

Thanks for the help and if anyone has any idea or suggestions to add, please do <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, Merry Christmas everyone <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
I also had an increasingly strong reaction to TOBI, so now we have me on this complicated rotation so I don;t take it as long and have a bigger break between rounds of TOBI. I take the TOBI for 3 weeks (b/c I found by the 4th week I just couldn;t tolerate it), go off it for 3 weeks, then take Coly-Mycin for 3 weeks, another 3 weeks off, and start the cycle again. That way I'm only getting 3 weeks of TOBI at a time and get 9 weeks off between doses. I also have a nebulized steroid, Pulmicort, which I sometimes take during the 3rd week of TOBI to prevent the irritation. So far this schedule seems to be working for me!

Eliana
 
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anonymous

New member
i do not tolerate tobi very well at all! it feels like i'm inhaling fiberglass. it also makes me short of breath, nauseous & i eventually get laryngitis. i have also tried cough drops, chloraseptic, gargling w/ salt water.... the only thing that seems to make a dent is drinking TONS of water. i know, it sounds trite, but it does help. unfortunately, i do not have any suggestions on how to take this drug effectively. i agree w/ the poster above, that the quality of life while on this drug sucks! it's like swapping existing symptoms for new ones. ???

i was also recently given Coly-Mycin to use instead. i have not taken it yet. not looking fwd to it. does anyone have any feedback on that drug?
 
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JennifersHope

New member
The same thing happends to me when I am on Tobi.. I am due to go back on it..in a few days.... and I don't want to... It does the exact same thing to me.. Feels like I am inhaling fiberglass...makes me choke.... and takes to long to do to boot..Takes me 25 minutes with my Pulmo aide....

When my voice gets hoarse from it.. ppl think I am sick... and then I spend the whole time telling ppl that I am not sick... The only thing that helps for me somewhat is drinking a lot of fluid... funny mine gets worse the longer I am on it.. My Dr talked to me about going on for two weeks and off for two instead..... but right now being that I am going in on my rough months.....I am staying on Tobi non stop through March...
 
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Mockingbird

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>JennifersHope</b></i><br>I am staying on Tobi non stop through March...<hr></blockquote>

Woah, are you serious? i don't think it's safe to be on TOBI for more that a month at a time.
 
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JennifersHope

New member
HMM... I don't know why it wouldn't be safe.... It has much less of a systemic effect then IVs...My dr told me to do it so I don't know... maybe because I am always sick in Feburary into March... Never in the history of my life have I ever not been sick during those months... Not for the whole time but usually for a good part of that time....
 
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mare

New member
I am having the same problems with the shortness of breath! I started using TOBI in august. I did the 28d on/off thing.
changed my dosage to once a day for the 28d. Everytime, byt the 3rd week I am so short of breath, I end up on Cipro for at least 3 weeks after. Mind you, I was not a "regular" user of Antibiotics. (one of the lucky ones) before TOBI. I am going to talk to my MD about forgetting TOBI.
 
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JustDucky

New member
Hi all...have about a week and a half to go on the 28 day cycle of TOBI, remember how I said it usually gets better for me after the second week? Well, now that I am hitting my 3rd week, I am starting to feel crappier...yeah I am hoarse, expected that, but my lungs are feeling awful. It could easily be because I might be coming down with something, I sure hope not. I have increased the Vest time with me, more secretions are coming up...I will get worried when I start to see green bugs with legs crawling out of my trache, so far it's still yellow and of course still has that distinctive cepacia smell, nothing new there. I have been so tired too...maybe too much holiday cheer..I definintely want to blame the TOBI on this one instead of an infection. I have been doing TOBI for almost a year now with the rotations and never really had too much trouble with them except in the beginning of treatment. I guess what I have learned about this thread is that everyone is different and does differently with each med....especially inhaled meds. I will muddle through the treatments and see how my body does without any suppressive therapy. IF it is an infection, then we will have a major problem within a couple of weeks, so please keep your fingers crossed! Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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jenjen2130

New member
I have been on TOBI and I cannot tolerate it at all. I get white lesions on my tongue and mouth so. I cannot take TOBI but i do take Tobramycin injection as a neb instead of Tobi.
Jennifer
 
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anonymous

New member
Dear Blindhearted,

Maybe you should talk to your doc about another antibiotic option, sweetie! You poor thing. I have cepacia, so I know how hard it is to find antibiotics. But, that sounds pretty bad. If it's making your life that hard, maybe it's not worth it?

Christian
 
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