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Tobi
- Thread starter smbriggs
- Start date
thelizardqueen
New member
I find for the first week I take TOBI I get a bit congested, until I get used to it.
thelizardqueen
New member
I find for the first week I take TOBI I get a bit congested, until I get used to it.
Oh oh me too, okay try this, after you do tobi gargle a little and drink someting, i swear it helps with the hoarseness, bad enough we have to inhale it, i don't need it sitting in my throat forever. And it usually makes me cough a lot when i first start it and then I feel much better. It is so irritating though that I used to be tempted to just stop it but then I noticed how much better I felt on it and decided I could make it through the first week of the general junky feeling.
Oh oh me too, okay try this, after you do tobi gargle a little and drink someting, i swear it helps with the hoarseness, bad enough we have to inhale it, i don't need it sitting in my throat forever. And it usually makes me cough a lot when i first start it and then I feel much better. It is so irritating though that I used to be tempted to just stop it but then I noticed how much better I felt on it and decided I could make it through the first week of the general junky feeling.
littledebbie
New member
That was me, forgot to login <img src="i/expressions/face-icon-small-blush.gif" border="0">
littledebbie
New member
That was me, forgot to login <img src="i/expressions/face-icon-small-blush.gif" border="0">
I have tried everything from taking albuterol first to drinking something during the treatment to gargaling right after. I just hate Tobi. My Doctor normally does not put me on it unless he sees my FEV1 go down. But this time I volunteered to take it. The Pseudomonas grew in my culture my last few cultures so I volunteered to do a clinical study. My docotor knows I hate Tobi, so he promised I only need to on it for 1 month. I can't believe I agreed to do this to myself.
I have tried everything from taking albuterol first to drinking something during the treatment to gargaling right after. I just hate Tobi. My Doctor normally does not put me on it unless he sees my FEV1 go down. But this time I volunteered to take it. The Pseudomonas grew in my culture my last few cultures so I volunteered to do a clinical study. My docotor knows I hate Tobi, so he promised I only need to on it for 1 month. I can't believe I agreed to do this to myself.
I recently took this for my lung transplant as I cultured psuedo. I did not get hoarse at all. The first time I did when I took it many years ago. Strange that I just noticed this a few days ago, I said, my voice is not hoarse. I cannot sing high notes though lol The funny thing with a lung transplant is you can cough up a tiny piece of mucus and the doctors give you antibiotics. Sometimes I put on a mask so I can inhale through my sinuses which is an issue for me.
Risa
Risa
I recently took this for my lung transplant as I cultured psuedo. I did not get hoarse at all. The first time I did when I took it many years ago. Strange that I just noticed this a few days ago, I said, my voice is not hoarse. I cannot sing high notes though lol The funny thing with a lung transplant is you can cough up a tiny piece of mucus and the doctors give you antibiotics. Sometimes I put on a mask so I can inhale through my sinuses which is an issue for me.
Risa
Risa
I did Tobi one month on, one month off which is a standard regimen for the drug. After 2 or 3 years of that, I developed a resistance to tobramycin, which sucked because so many of the IV's for us to fight infection are based on tobramycin. Another reason why chronic prophalactic antibiotic use to keep our cultures down isn't a good idea in the long run. Unless it's something like collistin where it's supposedly impossible for your bugs to get resistant to due to it's properties vs either gram negative or gram positive PA. I personally think collistin is crap, I felt great on it for the first couple of times using it every other month, then after that it was about as effective as inhaling saline antibiotic wise.
My good female friend on her CF deathbed was trying to warn me about tobi somehow, but she couldnt talk and couldnt write to tell me what she thought.
My good female friend on her CF deathbed was trying to warn me about tobi somehow, but she couldnt talk and couldnt write to tell me what she thought.
I did Tobi one month on, one month off which is a standard regimen for the drug. After 2 or 3 years of that, I developed a resistance to tobramycin, which sucked because so many of the IV's for us to fight infection are based on tobramycin. Another reason why chronic prophalactic antibiotic use to keep our cultures down isn't a good idea in the long run. Unless it's something like collistin where it's supposedly impossible for your bugs to get resistant to due to it's properties vs either gram negative or gram positive PA. I personally think collistin is crap, I felt great on it for the first couple of times using it every other month, then after that it was about as effective as inhaling saline antibiotic wise.
My good female friend on her CF deathbed was trying to warn me about tobi somehow, but she couldnt talk and couldnt write to tell me what she thought.
My good female friend on her CF deathbed was trying to warn me about tobi somehow, but she couldnt talk and couldnt write to tell me what she thought.
1shedcollector
New member
very interesting Sean, I wish we all could know more. I am very apprehensive when it come to drugs especailly new ones. This one is supposed to keep me out of the hospital. HMMM?
1shedcollector
New member
very interesting Sean, I wish we all could know more. I am very apprehensive when it come to drugs especailly new ones. This one is supposed to keep me out of the hospital. HMMM?