Meds that make you SOB

L

Landy

New member
I have found that as I get older & my lung function gets less, I notice that I just cannot tolerate inhaled meds like I used to.

Case in point: TOBI. I used TOBI for years and one month, I was recovering from a cold & got winded just showering and thought "Man, I'm almost done with my TOBI cycle, just when I need it the most". Well, funny thing happened, I could breathe better after the cycle was done.

Didn't think much of it, a month passes & it's time for TOBI again. So I start it, & here comes this repressive SOB a few days later. So, I review & think "what have I done differently lately?" and somehow, I wondered if it could be the TOBI? After some experimentation, sure enough, it was. So, due to a quality of life issue vs. any benefit? I was getting from TOBI, I discontinued it.

I then started Colistin & same darned thing happened. So I crossed if off the list too.

Now, I'm thinking that twice daily use of Advair is doing the very same thing!<img src="i/expressions/face-icon-small-confused.gif" border="0">

My ?? is, do any of you notice this, and with what drugs?

Also, do you just suffer thru it, or do you avoid meds that make you very SOB. I guess in my mind, my quality of already short life is more important to me. How can I enjoy life if I get winded with any exertion, even talking, while on these meds?

Thanks for any input & I would ask that only people that really have CF respond, not people that are posing as someone with CF.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

New member
I have found that as I get older & my lung function gets less, I notice that I just cannot tolerate inhaled meds like I used to.

Case in point: TOBI. I used TOBI for years and one month, I was recovering from a cold & got winded just showering and thought "Man, I'm almost done with my TOBI cycle, just when I need it the most". Well, funny thing happened, I could breathe better after the cycle was done.

Didn't think much of it, a month passes & it's time for TOBI again. So I start it, & here comes this repressive SOB a few days later. So, I review & think "what have I done differently lately?" and somehow, I wondered if it could be the TOBI? After some experimentation, sure enough, it was. So, due to a quality of life issue vs. any benefit? I was getting from TOBI, I discontinued it.

I then started Colistin & same darned thing happened. So I crossed if off the list too.

Now, I'm thinking that twice daily use of Advair is doing the very same thing!<img src="i/expressions/face-icon-small-confused.gif" border="0">

My ?? is, do any of you notice this, and with what drugs?

Also, do you just suffer thru it, or do you avoid meds that make you very SOB. I guess in my mind, my quality of already short life is more important to me. How can I enjoy life if I get winded with any exertion, even talking, while on these meds?

Thanks for any input & I would ask that only people that really have CF respond, not people that are posing as someone with CF.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

New member
I have found that as I get older & my lung function gets less, I notice that I just cannot tolerate inhaled meds like I used to.

Case in point: TOBI. I used TOBI for years and one month, I was recovering from a cold & got winded just showering and thought "Man, I'm almost done with my TOBI cycle, just when I need it the most". Well, funny thing happened, I could breathe better after the cycle was done.

Didn't think much of it, a month passes & it's time for TOBI again. So I start it, & here comes this repressive SOB a few days later. So, I review & think "what have I done differently lately?" and somehow, I wondered if it could be the TOBI? After some experimentation, sure enough, it was. So, due to a quality of life issue vs. any benefit? I was getting from TOBI, I discontinued it.

I then started Colistin & same darned thing happened. So I crossed if off the list too.

Now, I'm thinking that twice daily use of Advair is doing the very same thing!<img src="i/expressions/face-icon-small-confused.gif" border="0">

My ?? is, do any of you notice this, and with what drugs?

Also, do you just suffer thru it, or do you avoid meds that make you very SOB. I guess in my mind, my quality of already short life is more important to me. How can I enjoy life if I get winded with any exertion, even talking, while on these meds?

Thanks for any input & I would ask that only people that really have CF respond, not people that are posing as someone with CF.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

New member
I have found that as I get older & my lung function gets less, I notice that I just cannot tolerate inhaled meds like I used to.

Case in point: TOBI. I used TOBI for years and one month, I was recovering from a cold & got winded just showering and thought "Man, I'm almost done with my TOBI cycle, just when I need it the most". Well, funny thing happened, I could breathe better after the cycle was done.

Didn't think much of it, a month passes & it's time for TOBI again. So I start it, & here comes this repressive SOB a few days later. So, I review & think "what have I done differently lately?" and somehow, I wondered if it could be the TOBI? After some experimentation, sure enough, it was. So, due to a quality of life issue vs. any benefit? I was getting from TOBI, I discontinued it.

I then started Colistin & same darned thing happened. So I crossed if off the list too.

Now, I'm thinking that twice daily use of Advair is doing the very same thing!<img src="i/expressions/face-icon-small-confused.gif" border="0">

My ?? is, do any of you notice this, and with what drugs?

Also, do you just suffer thru it, or do you avoid meds that make you very SOB. I guess in my mind, my quality of already short life is more important to me. How can I enjoy life if I get winded with any exertion, even talking, while on these meds?

Thanks for any input & I would ask that only people that really have CF respond, not people that are posing as someone with CF.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

New member
I have found that as I get older & my lung function gets less, I notice that I just cannot tolerate inhaled meds like I used to.
<br />
<br />Case in point: TOBI. I used TOBI for years and one month, I was recovering from a cold & got winded just showering and thought "Man, I'm almost done with my TOBI cycle, just when I need it the most". Well, funny thing happened, I could breathe better after the cycle was done.
<br />
<br />Didn't think much of it, a month passes & it's time for TOBI again. So I start it, & here comes this repressive SOB a few days later. So, I review & think "what have I done differently lately?" and somehow, I wondered if it could be the TOBI? After some experimentation, sure enough, it was. So, due to a quality of life issue vs. any benefit? I was getting from TOBI, I discontinued it.
<br />
<br />I then started Colistin & same darned thing happened. So I crossed if off the list too.
<br />
<br />Now, I'm thinking that twice daily use of Advair is doing the very same thing!<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />
<br />My ?? is, do any of you notice this, and with what drugs?
<br />
<br />Also, do you just suffer thru it, or do you avoid meds that make you very SOB. I guess in my mind, my quality of already short life is more important to me. How can I enjoy life if I get winded with any exertion, even talking, while on these meds?
<br />
<br />Thanks for any input & I would ask that only people that really have CF respond, not people that are posing as someone with CF.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

AnD

New member
I have had that problem too, and had to take a 2 year+ break from Tobi after a bad, acute reaction which left me not reacting well to pretty much any iv ending in "myacin" either. I could take Colistin though. I still don't tolerate Tobi well (but don't have the same, acute reactions), but if I do my Advair a few minutes before my Tobi, I can take it almost the whole 4 weeks, and usually at least 3 weeks. If I miss it ONE time before Tobi though (and the further into the round of Tobi, the worse), I start on a slide to having to discontinue Tobi. And Colistin is bothering me a touch more than it used to, to I am going to try the Advair first with it also.

Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.

Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?

Good luck!
 
A

AnD

New member
I have had that problem too, and had to take a 2 year+ break from Tobi after a bad, acute reaction which left me not reacting well to pretty much any iv ending in "myacin" either. I could take Colistin though. I still don't tolerate Tobi well (but don't have the same, acute reactions), but if I do my Advair a few minutes before my Tobi, I can take it almost the whole 4 weeks, and usually at least 3 weeks. If I miss it ONE time before Tobi though (and the further into the round of Tobi, the worse), I start on a slide to having to discontinue Tobi. And Colistin is bothering me a touch more than it used to, to I am going to try the Advair first with it also.

Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.

Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?

Good luck!
 
A

AnD

New member
I have had that problem too, and had to take a 2 year+ break from Tobi after a bad, acute reaction which left me not reacting well to pretty much any iv ending in "myacin" either. I could take Colistin though. I still don't tolerate Tobi well (but don't have the same, acute reactions), but if I do my Advair a few minutes before my Tobi, I can take it almost the whole 4 weeks, and usually at least 3 weeks. If I miss it ONE time before Tobi though (and the further into the round of Tobi, the worse), I start on a slide to having to discontinue Tobi. And Colistin is bothering me a touch more than it used to, to I am going to try the Advair first with it also.

Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.

Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?

Good luck!
 
A

AnD

New member
I have had that problem too, and had to take a 2 year+ break from Tobi after a bad, acute reaction which left me not reacting well to pretty much any iv ending in "myacin" either. I could take Colistin though. I still don't tolerate Tobi well (but don't have the same, acute reactions), but if I do my Advair a few minutes before my Tobi, I can take it almost the whole 4 weeks, and usually at least 3 weeks. If I miss it ONE time before Tobi though (and the further into the round of Tobi, the worse), I start on a slide to having to discontinue Tobi. And Colistin is bothering me a touch more than it used to, to I am going to try the Advair first with it also.

Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.

Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?

Good luck!
 
A

AnD

New member
I have had that problem too, and had to take a 2 year+ break from Tobi after a bad, acute reaction which left me not reacting well to pretty much any iv ending in "myacin" either. I could take Colistin though. I still don't tolerate Tobi well (but don't have the same, acute reactions), but if I do my Advair a few minutes before my Tobi, I can take it almost the whole 4 weeks, and usually at least 3 weeks. If I miss it ONE time before Tobi though (and the further into the round of Tobi, the worse), I start on a slide to having to discontinue Tobi. And Colistin is bothering me a touch more than it used to, to I am going to try the Advair first with it also.
<br />
<br />Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.
<br />
<br /> Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src="i/expressions/face-icon-small-wink.gif" border="0"> )
<br />
<br />There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?
<br />
<br />Good luck!
 
L

Landy

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


Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.


Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src=""> )



There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?



Good luck!</end quote></div>

I do the discus 500/50. When I mentioned this to my doctor, he's now <i>starting</i> to act like it's all in my head (about the SOB connection to meds). I asked about other options & really didn't get a response, just the "all in your head" kind of response.

I used to use Pulmicort years ago, then switched to Advair for convenience sake, but am now wondering about trying the Pulmicort again.*shrugs*

Thanks for the response!
 
L

Landy

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


Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.


Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src=""> )



There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?



Good luck!</end quote></div>

I do the discus 500/50. When I mentioned this to my doctor, he's now <i>starting</i> to act like it's all in my head (about the SOB connection to meds). I asked about other options & really didn't get a response, just the "all in your head" kind of response.

I used to use Pulmicort years ago, then switched to Advair for convenience sake, but am now wondering about trying the Pulmicort again.*shrugs*

Thanks for the response!
 
L

Landy

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


Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.


Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src=""> )



There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?



Good luck!</end quote></div>

I do the discus 500/50. When I mentioned this to my doctor, he's now <i>starting</i> to act like it's all in my head (about the SOB connection to meds). I asked about other options & really didn't get a response, just the "all in your head" kind of response.

I used to use Pulmicort years ago, then switched to Advair for convenience sake, but am now wondering about trying the Pulmicort again.*shrugs*

Thanks for the response!
 
L

Landy

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


Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.


Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src=""> )



There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?



Good luck!</end quote>

I do the discus 500/50. When I mentioned this to my doctor, he's now <i>starting</i> to act like it's all in my head (about the SOB connection to meds). I asked about other options & really didn't get a response, just the "all in your head" kind of response.

I used to use Pulmicort years ago, then switched to Advair for convenience sake, but am now wondering about trying the Pulmicort again.*shrugs*

Thanks for the response!
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
<br />
<br />
<br />Speaking of Advair...are you using the discus or the metered inhaler? I had to switch to the metered inhaler, because I was not tolerating the powder anymore. I use it with a Vortex chamber and I think it works better than the discus.
<br />
<br />
<br /> Occasionally I think I am having the same reaction with my inhaler, but if I take a couple of days of just once a day, instead of twice, it gets better and I can go back to twice a day. I take 2 puffs of the 115 metered inhaler, which is equal to Advair 250. (ask your doctor first, blah, blah <img src=""> )
<br />
<br />
<br />
<br />There are similar meds out there, and I have thought about asking my dr. about switching it up every once in a while. Maybe that would work for you if you are already on the inhaler?
<br />
<br />
<br />
<br />Good luck!</end quote>
<br />
<br />I do the discus 500/50. When I mentioned this to my doctor, he's now <i>starting</i> to act like it's all in my head (about the SOB connection to meds). I asked about other options & really didn't get a response, just the "all in your head" kind of response.
<br />
<br />I used to use Pulmicort years ago, then switched to Advair for convenience sake, but am now wondering about trying the Pulmicort again.*shrugs*
<br />
<br />Thanks for the response!
 
M

Melissa75

Administrator
Try Symbicort if you want to switch around. Like Advair it has the steriod and the 12-hr bronchodilator. Pulmicort alone does not have a long-acting bronchodilator. I am with Andee on preferring the MDI aerosol over the powder. When I did the pulmicort powder, my pulmo at the time thought I was deluded when I said I thought it made me cough more.
 
M

Melissa75

Administrator
Try Symbicort if you want to switch around. Like Advair it has the steriod and the 12-hr bronchodilator. Pulmicort alone does not have a long-acting bronchodilator. I am with Andee on preferring the MDI aerosol over the powder. When I did the pulmicort powder, my pulmo at the time thought I was deluded when I said I thought it made me cough more.
 
M

Melissa75

Administrator
Try Symbicort if you want to switch around. Like Advair it has the steriod and the 12-hr bronchodilator. Pulmicort alone does not have a long-acting bronchodilator. I am with Andee on preferring the MDI aerosol over the powder. When I did the pulmicort powder, my pulmo at the time thought I was deluded when I said I thought it made me cough more.
 
M

Melissa75

Administrator
Try Symbicort if you want to switch around. Like Advair it has the steriod and the 12-hr bronchodilator. Pulmicort alone does not have a long-acting bronchodilator. I am with Andee on preferring the MDI aerosol over the powder. When I did the pulmicort powder, my pulmo at the time thought I was deluded when I said I thought it made me cough more.
 
M

Melissa75

Administrator
Try Symbicort if you want to switch around. Like Advair it has the steriod and the 12-hr bronchodilator. Pulmicort alone does not have a long-acting bronchodilator. I am with Andee on preferring the MDI aerosol over the powder. When I did the pulmicort powder, my pulmo at the time thought I was deluded when I said I thought it made me cough more.
 
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