tobi troubles

[bananas]

hi there,

i was wondering if anyone had a problem with the tobi neb. my doc but me on it for a month to get my pft's back up to where they should be but it had the oppsite effect. the tobi made me worse. the pft's droped and and so did my weight. i was breatheless all the time and made me feel all round horrilbe.
i heard good things in the past about the tobi neb and was looking forward to the benefits....but was dissapointed.
has anyone else had this problem or i am the only one??

anna, 30, dublin

 

[bananas]

hi there,

i was wondering if anyone had a problem with the tobi neb. my doc but me on it for a month to get my pft's back up to where they should be but it had the oppsite effect. the tobi made me worse. the pft's droped and and so did my weight. i was breatheless all the time and made me feel all round horrilbe.
i heard good things in the past about the tobi neb and was looking forward to the benefits....but was dissapointed.
has anyone else had this problem or i am the only one??

anna, 30, dublin

 

[bananas]

hi there,

i was wondering if anyone had a problem with the tobi neb. my doc but me on it for a month to get my pft's back up to where they should be but it had the oppsite effect. the tobi made me worse. the pft's droped and and so did my weight. i was breatheless all the time and made me feel all round horrilbe.
i heard good things in the past about the tobi neb and was looking forward to the benefits....but was dissapointed.
has anyone else had this problem or i am the only one??

anna, 30, dublin

 

[blindhearted]

I have recently stopped using TOBI. I had been on it since it came out. I stopped in Oct 06 because it was causing me to be extremely tight in my chest and feel short of breathe. My O2 Sats would drop on the Tobi months. When I first started Tobi was great. As the years went on, I felt terrible when I used it. Finally I felt it was doing more harm than good and my doctor agreed. Since stopping Tobi my PFTs have not dropped any, they have been stable and my O2 Sats have returned to normal. At this present time there are no plans to put me back on Tobi.

 

[blindhearted]

I have recently stopped using TOBI. I had been on it since it came out. I stopped in Oct 06 because it was causing me to be extremely tight in my chest and feel short of breathe. My O2 Sats would drop on the Tobi months. When I first started Tobi was great. As the years went on, I felt terrible when I used it. Finally I felt it was doing more harm than good and my doctor agreed. Since stopping Tobi my PFTs have not dropped any, they have been stable and my O2 Sats have returned to normal. At this present time there are no plans to put me back on Tobi.

 

[blindhearted]

I have recently stopped using TOBI. I had been on it since it came out. I stopped in Oct 06 because it was causing me to be extremely tight in my chest and feel short of breathe. My O2 Sats would drop on the Tobi months. When I first started Tobi was great. As the years went on, I felt terrible when I used it. Finally I felt it was doing more harm than good and my doctor agreed. Since stopping Tobi my PFTs have not dropped any, they have been stable and my O2 Sats have returned to normal. At this present time there are no plans to put me back on Tobi.

 

[bananas]

danyell,
cheers for the reply. i have no plans to go back on it either. i am back on my colistin and that has always worked for me.
take care and thanks again

anna.

 

[bananas]

danyell,
cheers for the reply. i have no plans to go back on it either. i am back on my colistin and that has always worked for me.
take care and thanks again

anna.

 

[bananas]

danyell,
cheers for the reply. i have no plans to go back on it either. i am back on my colistin and that has always worked for me.
take care and thanks again

anna.

 

[AnD]

I developed similar problems and stopped it for a couple of years. Then, I added it back in, but started with a half a dose each treatment, then to 2/3's of a vial, then 3/4, etc. and I do Advair before each treatment, and it is working for me again. Also, after the first episode of chest tightness, wheezing etc., I went in the hospital for iv's since I couldn't do the Tobi, and they put me on Genamyacin. Then my face swelled, too, and they had to switch me to something else. The last 2 times I have been on iv Tobra, I've had IV fever (also called "drug fever") and dizziness/vertigo and had to stop after a week or so. I also don't do my Tobi more than 3 weeks, and it still works (the old "mix it yourself" inhaled tobramyacin was usually only for 2 weeks if I remember right in my old clinic <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).

 

[AnD]

I developed similar problems and stopped it for a couple of years. Then, I added it back in, but started with a half a dose each treatment, then to 2/3's of a vial, then 3/4, etc. and I do Advair before each treatment, and it is working for me again. Also, after the first episode of chest tightness, wheezing etc., I went in the hospital for iv's since I couldn't do the Tobi, and they put me on Genamyacin. Then my face swelled, too, and they had to switch me to something else. The last 2 times I have been on iv Tobra, I've had IV fever (also called "drug fever") and dizziness/vertigo and had to stop after a week or so. I also don't do my Tobi more than 3 weeks, and it still works (the old "mix it yourself" inhaled tobramyacin was usually only for 2 weeks if I remember right in my old clinic <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).

 

[AnD]

I developed similar problems and stopped it for a couple of years. Then, I added it back in, but started with a half a dose each treatment, then to 2/3's of a vial, then 3/4, etc. and I do Advair before each treatment, and it is working for me again. Also, after the first episode of chest tightness, wheezing etc., I went in the hospital for iv's since I couldn't do the Tobi, and they put me on Genamyacin. Then my face swelled, too, and they had to switch me to something else. The last 2 times I have been on iv Tobra, I've had IV fever (also called "drug fever") and dizziness/vertigo and had to stop after a week or so. I also don't do my Tobi more than 3 weeks, and it still works (the old "mix it yourself" inhaled tobramyacin was usually only for 2 weeks if I remember right in my old clinic <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).

 

[Sreh]

I have used tobi several times in the past with good results. This last round that I have used it, feb of this year, I went through the same thing you are going through. I lost a lot of my breathing, was using albuterol every 4 hours down to every 1-2 hours. Went on for days, then I had a bronc scheduled and it put me over the edge. My O2 requirements doubled and breathing treats more than doubled. Fortunately I got my call for Tx. I think, and this is just my opinion, as with all anti-biotics that you will eventually build a resistance and an intolorance to over time. I feel that is what has happened to me, I would suggest confirming that with your doctor in your case.

But yes, I went through the same thing.

 

[Sreh]

I have used tobi several times in the past with good results. This last round that I have used it, feb of this year, I went through the same thing you are going through. I lost a lot of my breathing, was using albuterol every 4 hours down to every 1-2 hours. Went on for days, then I had a bronc scheduled and it put me over the edge. My O2 requirements doubled and breathing treats more than doubled. Fortunately I got my call for Tx. I think, and this is just my opinion, as with all anti-biotics that you will eventually build a resistance and an intolorance to over time. I feel that is what has happened to me, I would suggest confirming that with your doctor in your case.

But yes, I went through the same thing.

 

[Sreh]

I have used tobi several times in the past with good results. This last round that I have used it, feb of this year, I went through the same thing you are going through. I lost a lot of my breathing, was using albuterol every 4 hours down to every 1-2 hours. Went on for days, then I had a bronc scheduled and it put me over the edge. My O2 requirements doubled and breathing treats more than doubled. Fortunately I got my call for Tx. I think, and this is just my opinion, as with all anti-biotics that you will eventually build a resistance and an intolorance to over time. I feel that is what has happened to me, I would suggest confirming that with your doctor in your case.

But yes, I went through the same thing.

 

[coltsfan715]

I have had many issues with TOBI over the years - but I do currently use it.

When I first took it as a teen I had to stop it for several years once I hit 21 cause it made me cough up blood. I stayed off of it for 2 years then tried it again. I did not have hemoptysis when I started it again.

I do get thrush very badly when taking it and after 2-3 weeks I start to get very short of breath and such. I am now on a regimen of 2 weeks on and 2 weeks off because I can not tolerate a full month at all.

I do get some benefit from using it in the first few weeks that is why I still try to take it. It does help to thin things out for me in those first weeks - it is once I get past that point that I start to have issues. I have not seen a drop in PFTs or monitored my sats in relation to the TOBI to know for sure if that effects those stats or not.

Take Care,
Lindsey

 

[coltsfan715]

I have had many issues with TOBI over the years - but I do currently use it.

When I first took it as a teen I had to stop it for several years once I hit 21 cause it made me cough up blood. I stayed off of it for 2 years then tried it again. I did not have hemoptysis when I started it again.

I do get thrush very badly when taking it and after 2-3 weeks I start to get very short of breath and such. I am now on a regimen of 2 weeks on and 2 weeks off because I can not tolerate a full month at all.

I do get some benefit from using it in the first few weeks that is why I still try to take it. It does help to thin things out for me in those first weeks - it is once I get past that point that I start to have issues. I have not seen a drop in PFTs or monitored my sats in relation to the TOBI to know for sure if that effects those stats or not.

Take Care,
Lindsey

 

[coltsfan715]

I have had many issues with TOBI over the years - but I do currently use it.

When I first took it as a teen I had to stop it for several years once I hit 21 cause it made me cough up blood. I stayed off of it for 2 years then tried it again. I did not have hemoptysis when I started it again.

I do get thrush very badly when taking it and after 2-3 weeks I start to get very short of breath and such. I am now on a regimen of 2 weeks on and 2 weeks off because I can not tolerate a full month at all.

I do get some benefit from using it in the first few weeks that is why I still try to take it. It does help to thin things out for me in those first weeks - it is once I get past that point that I start to have issues. I have not seen a drop in PFTs or monitored my sats in relation to the TOBI to know for sure if that effects those stats or not.

Take Care,
Lindsey

 

[thefrogprincess]

My brother cannot tolerate Tobi for the same reasons that you mentioned. It makes me feel short of breath for the first day or two and then for about half an hour after each treatment on the following days.

 

[thefrogprincess]

My brother cannot tolerate Tobi for the same reasons that you mentioned. It makes me feel short of breath for the first day or two and then for about half an hour after each treatment on the following days.