TOBI not working?

A

AnnieT

New member
I have been on TOBI for about 2 weeks now, first time I have ever been on it and I feel it's not working for me. I realize I haven't been on it that long, but I am very, very rundown and I feel like I'm drowning if that makes any sense between my lungs, ears & sinuses.

I need advice, my doctor also wants me to take Avelox on top of the TOBI for my Pseudomonas, but I'm afraid of taking all this medication because it's very hard for me to gain weight.

Input?
 
A

AnnieT

New member
I have been on TOBI for about 2 weeks now, first time I have ever been on it and I feel it's not working for me. I realize I haven't been on it that long, but I am very, very rundown and I feel like I'm drowning if that makes any sense between my lungs, ears & sinuses.

I need advice, my doctor also wants me to take Avelox on top of the TOBI for my Pseudomonas, but I'm afraid of taking all this medication because it's very hard for me to gain weight.

Input?
 
A

AnnieT

New member
I have been on TOBI for about 2 weeks now, first time I have ever been on it and I feel it's not working for me. I realize I haven't been on it that long, but I am very, very rundown and I feel like I'm drowning if that makes any sense between my lungs, ears & sinuses.
<br />
<br />I need advice, my doctor also wants me to take Avelox on top of the TOBI for my Pseudomonas, but I'm afraid of taking all this medication because it's very hard for me to gain weight.
<br />
<br />Input?
 
J

JustDucky

New member
Did you have sensitivities done on your pseudomonas? Usually even if it is resistant on the lab, it is given at such a high dose via the neb that it overcomes the MIC and kills it. It took a couple of years for the TOBI not to work for me, I am now on Colistin all of the time, but even with that, my resistant PA grew....so more tweaking. LUckily, there are other meds that the doc can try via the neb, Cayston, Colistin etc....if the TOBI truly isn't doing it's job.
I tend to get extremely gunky the first few weeks of any antibiotic, I guess that is my body's way of purging the crud from my lungs. I tend to feel worse before I feel better....Maybe that is happening with you. I would get concerned if your sputum was actually getting thicker, you were getting temps, color getting darker etc...If there is just a whole bunch but it is thinner and lighter, then for me, that is a good sign. But everyone is different, it is good that you are seeing your doc soon. I sure hope he can get things on the right path for you so that you can feel more like yourself soon.

Hugs, Jenn
 
J

JustDucky

New member
Did you have sensitivities done on your pseudomonas? Usually even if it is resistant on the lab, it is given at such a high dose via the neb that it overcomes the MIC and kills it. It took a couple of years for the TOBI not to work for me, I am now on Colistin all of the time, but even with that, my resistant PA grew....so more tweaking. LUckily, there are other meds that the doc can try via the neb, Cayston, Colistin etc....if the TOBI truly isn't doing it's job.
I tend to get extremely gunky the first few weeks of any antibiotic, I guess that is my body's way of purging the crud from my lungs. I tend to feel worse before I feel better....Maybe that is happening with you. I would get concerned if your sputum was actually getting thicker, you were getting temps, color getting darker etc...If there is just a whole bunch but it is thinner and lighter, then for me, that is a good sign. But everyone is different, it is good that you are seeing your doc soon. I sure hope he can get things on the right path for you so that you can feel more like yourself soon.

Hugs, Jenn
 
J

JustDucky

New member
Did you have sensitivities done on your pseudomonas? Usually even if it is resistant on the lab, it is given at such a high dose via the neb that it overcomes the MIC and kills it. It took a couple of years for the TOBI not to work for me, I am now on Colistin all of the time, but even with that, my resistant PA grew....so more tweaking. LUckily, there are other meds that the doc can try via the neb, Cayston, Colistin etc....if the TOBI truly isn't doing it's job.
<br />I tend to get extremely gunky the first few weeks of any antibiotic, I guess that is my body's way of purging the crud from my lungs. I tend to feel worse before I feel better....Maybe that is happening with you. I would get concerned if your sputum was actually getting thicker, you were getting temps, color getting darker etc...If there is just a whole bunch but it is thinner and lighter, then for me, that is a good sign. But everyone is different, it is good that you are seeing your doc soon. I sure hope he can get things on the right path for you so that you can feel more like yourself soon.
<br />
<br />Hugs, Jenn
 
J

Jana

New member
I've been on the TOBI month on/off routine for about 10 years now. While my PA does seem to be a bit more controlled on the on months, I often have to take another antibiotic on top of it. My understanding is that it's meant more for long-term control rather than to actually treat it by itself. The doctors tell me PA generally responds better to more than one antibiotic at a time, so perhaps that is why.

Hope you feel better soon!
 
J

Jana

New member
I've been on the TOBI month on/off routine for about 10 years now. While my PA does seem to be a bit more controlled on the on months, I often have to take another antibiotic on top of it. My understanding is that it's meant more for long-term control rather than to actually treat it by itself. The doctors tell me PA generally responds better to more than one antibiotic at a time, so perhaps that is why.

Hope you feel better soon!
 
J

Jana

New member
I've been on the TOBI month on/off routine for about 10 years now. While my PA does seem to be a bit more controlled on the on months, I often have to take another antibiotic on top of it. My understanding is that it's meant more for long-term control rather than to actually treat it by itself. The doctors tell me PA generally responds better to more than one antibiotic at a time, so perhaps that is why.
<br />
<br />Hope you feel better soon!
 
G

Giggles

New member
Give it more time. I tend to feel yucko and junky the first 10 days of my Colistin month and then I feel great! I would try it for a whole month and then see how your off month goes and then try it again and then determine if you want to stop. Maybe try doing a PFT after your TOBI month and then do another at the end of your off month and see what you numbers do. But I would for sure give it some more time

Good luck and feel better!

jennifer 38 with CF and CFRD
 
G

Giggles

New member
Give it more time. I tend to feel yucko and junky the first 10 days of my Colistin month and then I feel great! I would try it for a whole month and then see how your off month goes and then try it again and then determine if you want to stop. Maybe try doing a PFT after your TOBI month and then do another at the end of your off month and see what you numbers do. But I would for sure give it some more time

Good luck and feel better!

jennifer 38 with CF and CFRD
 
G

Giggles

New member
Give it more time. I tend to feel yucko and junky the first 10 days of my Colistin month and then I feel great! I would try it for a whole month and then see how your off month goes and then try it again and then determine if you want to stop. Maybe try doing a PFT after your TOBI month and then do another at the end of your off month and see what you numbers do. But I would for sure give it some more time
<br />
<br />Good luck and feel better!
<br />
<br />jennifer 38 with CF and CFRD
 
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