TOBI affects

[ladybug]

I had the same issues with TOBI and hated it. It slowly got to the point where I was too sob to walk up the stairs after I did TOBI. weird. Not sure how it affected my FEV1, but my guess is not good.

I actually have something similar happen now that I'm on colistyn... I am finding I am more SOB on my on months. I also have a few percentage points drop in FEV1 (that i've noticed) when I am on coli. Its weird. I wonder if it isn't due to the bronchospasm effects these meds can have on us? I just FEEL better on my off months of coli too. Hmmmm.... Although I do think its still good for me to stay on some sort of abx at this time (and AZLI is not available to most of us that I know of since FDA didn't approve it... grrr..)

Anyway, for me I'd rather be on an abx inhaled every 28 days, BUT only if I can still function fairly well on it. You could certainly ask your doc about colistyn as I know many are put on that when they can't tolerate TOBI.

Good luck finding something that works for you!

 

[ladybug]

I had the same issues with TOBI and hated it. It slowly got to the point where I was too sob to walk up the stairs after I did TOBI. weird. Not sure how it affected my FEV1, but my guess is not good.

I actually have something similar happen now that I'm on colistyn... I am finding I am more SOB on my on months. I also have a few percentage points drop in FEV1 (that i've noticed) when I am on coli. Its weird. I wonder if it isn't due to the bronchospasm effects these meds can have on us? I just FEEL better on my off months of coli too. Hmmmm.... Although I do think its still good for me to stay on some sort of abx at this time (and AZLI is not available to most of us that I know of since FDA didn't approve it... grrr..)

Anyway, for me I'd rather be on an abx inhaled every 28 days, BUT only if I can still function fairly well on it. You could certainly ask your doc about colistyn as I know many are put on that when they can't tolerate TOBI.

Good luck finding something that works for you!

 

[ladybug]

I had the same issues with TOBI and hated it. It slowly got to the point where I was too sob to walk up the stairs after I did TOBI. weird. Not sure how it affected my FEV1, but my guess is not good.

I actually have something similar happen now that I'm on colistyn... I am finding I am more SOB on my on months. I also have a few percentage points drop in FEV1 (that i've noticed) when I am on coli. Its weird. I wonder if it isn't due to the bronchospasm effects these meds can have on us? I just FEEL better on my off months of coli too. Hmmmm.... Although I do think its still good for me to stay on some sort of abx at this time (and AZLI is not available to most of us that I know of since FDA didn't approve it... grrr..)

Anyway, for me I'd rather be on an abx inhaled every 28 days, BUT only if I can still function fairly well on it. You could certainly ask your doc about colistyn as I know many are put on that when they can't tolerate TOBI.

Good luck finding something that works for you!

 

[ladybug]

I had the same issues with TOBI and hated it. It slowly got to the point where I was too sob to walk up the stairs after I did TOBI. weird. Not sure how it affected my FEV1, but my guess is not good.

I actually have something similar happen now that I'm on colistyn... I am finding I am more SOB on my on months. I also have a few percentage points drop in FEV1 (that i've noticed) when I am on coli. Its weird. I wonder if it isn't due to the bronchospasm effects these meds can have on us? I just FEEL better on my off months of coli too. Hmmmm.... Although I do think its still good for me to stay on some sort of abx at this time (and AZLI is not available to most of us that I know of since FDA didn't approve it... grrr..)

Anyway, for me I'd rather be on an abx inhaled every 28 days, BUT only if I can still function fairly well on it. You could certainly ask your doc about colistyn as I know many are put on that when they can't tolerate TOBI.

Good luck finding something that works for you!

 

[ladybug]

I had the same issues with TOBI and hated it. It slowly got to the point where I was too sob to walk up the stairs after I did TOBI. weird. Not sure how it affected my FEV1, but my guess is not good.
<br />
<br />I actually have something similar happen now that I'm on colistyn... I am finding I am more SOB on my on months. I also have a few percentage points drop in FEV1 (that i've noticed) when I am on coli. Its weird. I wonder if it isn't due to the bronchospasm effects these meds can have on us? I just FEEL better on my off months of coli too. Hmmmm.... Although I do think its still good for me to stay on some sort of abx at this time (and AZLI is not available to most of us that I know of since FDA didn't approve it... grrr..)
<br />
<br />Anyway, for me I'd rather be on an abx inhaled every 28 days, BUT only if I can still function fairly well on it. You could certainly ask your doc about colistyn as I know many are put on that when they can't tolerate TOBI.
<br />
<br />Good luck finding something that works for you!
<br />
<br />

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>

My dr told me to stop TOBI because my PFTs went down and said that with about 5% of patients, TOBI affects them badly and doesnt actually help/ Im going back to re-test in a month after being off of it. Anyone ever have that happen to them?</end quote></div>

I had a similar experience with TOBI. I would be curious to see if your FEV1 improves or not...if you remember, please let us know!

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>

My dr told me to stop TOBI because my PFTs went down and said that with about 5% of patients, TOBI affects them badly and doesnt actually help/ Im going back to re-test in a month after being off of it. Anyone ever have that happen to them?</end quote></div>

I had a similar experience with TOBI. I would be curious to see if your FEV1 improves or not...if you remember, please let us know!

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>

My dr told me to stop TOBI because my PFTs went down and said that with about 5% of patients, TOBI affects them badly and doesnt actually help/ Im going back to re-test in a month after being off of it. Anyone ever have that happen to them?</end quote></div>

I had a similar experience with TOBI. I would be curious to see if your FEV1 improves or not...if you remember, please let us know!

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>

My dr told me to stop TOBI because my PFTs went down and said that with about 5% of patients, TOBI affects them badly and doesnt actually help/ Im going back to re-test in a month after being off of it. Anyone ever have that happen to them?</end quote>

I had a similar experience with TOBI. I would be curious to see if your FEV1 improves or not...if you remember, please let us know!

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rokiss12</b></i>
<br />
<br />My dr told me to stop TOBI because my PFTs went down and said that with about 5% of patients, TOBI affects them badly and doesnt actually help/ Im going back to re-test in a month after being off of it. Anyone ever have that happen to them?</end quote>
<br />
<br />I had a similar experience with TOBI. I would be curious to see if your FEV1 improves or not...if you remember, please let us know!
<br />
<br />