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TOBI Reactions

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rmklaus

New member
Hello, I have had a very bad reaction to TOBI and I'm wondering if any one else has had the same or a reaction they didn't like to TOBI? I did my first one last night after all my other inhaled meds. I felt good until I laid down. My throat felt like it was on fire and it was scratchy nothing I did help it. I also had real shallow and shortness of breath. I have tried TOBI 5 different times now and each time it has caused a reaction to me. This was the worst one by far. I'm still having trouble today with an increased cough and my sputum is very thick now also. I'm hoping that everything smoothes out after some time has gone by.Thanks in advance for any information about reactions to TOBI.
 
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anonymous

New member
Hey Melissa, it's Michelle C. I have terrible reactions to Tobi, even though I don't have CF. Every time Carly is on it, I end up on Prednisone and albutlerol every couple of hrs. The docs told me that it does cause broncho spasms in some people. Definately tell the docs. Take Care, Michelle C.
 
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anonymous

New member
I also react to TOBI with a raspy throat and sometimes shortness of breath. I started to spray my throat with throat spray, Chloraseptic, to numb it before I do a treatment, that has helped some. I have been doing it for about four years, I think, over time my reaction to it has gotten better. I still find sometimes that it gives me a false sense of feeling well. It is as though it makes my sputum less but yet not, if that makes any sense. Try the spray, and really get it in there. I always get a raspy voice, but the throat isn't as bad. Also another thing I started doing was to make sure not do it last thing before going to bed, for some reason if I am up for a while after I finish, it doesn't seem to effect me as bad. Oh, one last thing, celestial seasons throat drops also help. Good luck, I hope you can get it to work for you. I think it is a great drug if you can get it to work for you and not against you. Sarah 26 w/cf
 
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anonymous

New member
Hi,I tried inhaling tobi only one time and I won´t do it again! After about 1 week I started to loose my voice. Also I stopped inhaling after about 2 weeks, my voice didn´t come back for 5 weeks; no doctor knew, what to do.It was more or less luck, that one doctor- whom I consulted because of something else- said I should try Voltaren tablets. Luckily they worked at once!ByeUli from Germany
 
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anonymous

New member
Talk to your doc!!!! I was on tobi for the first time last November, it made me sooo sick and i have yet to recover. My mucus became too thick to cough out and it all became stuck in me and caused a major infection and damage. My doc didn't believe me about my reaction, but the fact is it happened. I did not get any throat troubles, just sick all the time, couldn't hold down food, with every dose it seemed like energy was being sucked out of me, after using it for a week i couldn't get out of bed, litteraly was carried by my bf from the bed to the couch, i too thought my symptoms would get better with time, i was told it can take up to 3 weeks, but at the rate i was going i honestly don't believe i had 3 weeks left to live if i kept taking it. Turns out my lungs were ticked off and closing themselves off, i had to be pumped up with steroids and brnchodilaters for the first week of being in hospital after it. I did home IV from Dec 3 until this past Tuesday, ecluding one week just after Xmas. so yeah talk to your doc!Love Jewel
 
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anonymous

New member
I have a problem with tightness of my chest right after i do tobi or pulmo. I can't do either one right before bed because as soon as i lay down it feels worse and i feel like i am wheezing. but after 30 min or so i feel better. i was always told that tobi makes the mucous thick because its the medicine sticking to it. but it doesn't help it come out any. i don't notice a difference when i am on tobi and feeling fine. i only notce when i am sick. its seems my coughing and mucous gets worse before i get better but it seems to work along with ivs. i dunno. i think it may not help some of us but as long as it helps someone its good. it just might not be the drug for certain people.amanda
 
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anonymous

New member
Hi - I'm glad to hear that we are not alone. My son's doctors told us that they never heard of reactions to Tobi, but my son cannot stand a full dose. He gets very hyperactive two hours after each dose, and has trouble sleeping.
 
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anonymous

New member
Hi - I'm glad to hear that we are not alone. My son's doctors told us that they never heard of reactions to Tobi, but my son cannot stand a full dose. He gets very hyperactive two hours after each dose, and has trouble sleeping.
 
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anonymous

New member
rmklaus,

I also hate Tobi, it actually made things worse for me. When I was on Tobi I could not exercise and coughed a lot more than I normally and was very fatigued all the time. I would try and ride my exercise bike and a lot of times after only 10 minutes I was coughing so much that I had to stop. I am on Colistin now and have not had any problems exercising. The colistin does not irritate my airways and I am not coughing any more than I usually do.

If you are having this much trouble, don't hesitate to talk to your doctor. I put up with this crap for over a year, way too long.


Dave 29 w/cf
 
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anonymous

New member
rmklaus,

I also hate Tobi, it actually made things worse for me. When I was on Tobi I could not exercise and coughed a lot more than I normally and was very fatigued all the time. I would try and ride my exercise bike and a lot of times after only 10 minutes I was coughing so much that I had to stop. I am on Colistin now and have not had any problems exercising. The colistin does not irritate my airways and I am not coughing any more than I usually do.

If you are having this much trouble, don't hesitate to talk to your doctor. I put up with this crap for over a year, way too long.


Dave 29 w/cf
 
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anonymous

New member
My mom is allergic to gentomycin.. there for she is allergic to anything in it's family. She couldn't stay around me when I did my masks because of it. I would just to make sure have a allergy test for it. The last thing you want is to be on a medicine that you are even slightly allergic to. I've been continuiously on tobi since I was about 7. I don't do the one month on one month off. I'm always on it. It's never given me a problem. But I can't actually think of any medication that has.


Ashley 20 w/ cf
 
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anonymous

New member
My mom is allergic to gentomycin.. there for she is allergic to anything in it's family. She couldn't stay around me when I did my masks because of it. I would just to make sure have a allergy test for it. The last thing you want is to be on a medicine that you are even slightly allergic to. I've been continuiously on tobi since I was about 7. I don't do the one month on one month off. I'm always on it. It's never given me a problem. But I can't actually think of any medication that has.


Ashley 20 w/ cf
 
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