Cayston users?

[windex125]

I had those symptoms as well. I said where is all the phelem that pours out of me on a daily basis, I was dry, my throat was raspy. and coughed with the first inhalation, but I kept it up and it did seem to subside and within a week of stopping it guess what I was in full force again like a flowing founatin. Do I think it helped yes, I think I will try it again if need be. I had bad symptoms with the pulzyome as well no voice, sore thorat but never had a pulg again and it's been years that I've been using that, this stuff just flows so easily, if I bend to tie my shoe I need a dixie cup in hand, simply amazing if I am home no problem BUT of course when I am out that is another issue. Good luck. Pat-56/CF

 

[windex125]

I had those symptoms as well. I said where is all the phelem that pours out of me on a daily basis, I was dry, my throat was raspy. and coughed with the first inhalation, but I kept it up and it did seem to subside and within a week of stopping it guess what I was in full force again like a flowing founatin. Do I think it helped yes, I think I will try it again if need be. I had bad symptoms with the pulzyome as well no voice, sore thorat but never had a pulg again and it's been years that I've been using that, this stuff just flows so easily, if I bend to tie my shoe I need a dixie cup in hand, simply amazing if I am home no problem BUT of course when I am out that is another issue. Good luck. Pat-56/CF

 

[windex125]

I had those symptoms as well. I said where is all the phelem that pours out of me on a daily basis, I was dry, my throat was raspy. and coughed with the first inhalation, but I kept it up and it did seem to subside and within a week of stopping it guess what I was in full force again like a flowing founatin. Do I think it helped yes, I think I will try it again if need be. I had bad symptoms with the pulzyome as well no voice, sore thorat but never had a pulg again and it's been years that I've been using that, this stuff just flows so easily, if I bend to tie my shoe I need a dixie cup in hand, simply amazing if I am home no problem BUT of course when I am out that is another issue. Good luck. Pat-56/CF

 

[windex125]

I had those symptoms as well. I said where is all the phelem that pours out of me on a daily basis, I was dry, my throat was raspy. and coughed with the first inhalation, but I kept it up and it did seem to subside and within a week of stopping it guess what I was in full force again like a flowing founatin. Do I think it helped yes, I think I will try it again if need be. I had bad symptoms with the pulzyome as well no voice, sore thorat but never had a pulg again and it's been years that I've been using that, this stuff just flows so easily, if I bend to tie my shoe I need a dixie cup in hand, simply amazing if I am home no problem BUT of course when I am out that is another issue. Good luck. Pat-56/CF

 

[melx]

Maxx Nathaniel: I have had a severe bronchospasm reaction to Cayston months after first starting it. Unfortunately it is now consistently producing the bronchospasm and I have had to stop using Cayston. It is unfortunate because it was really helping clear the congestion.

Giggles/Jennifer: I thought you posted a question that referenced you having an adverse response to Cayston a few weeks back? Did you re-evaluate and figure something else was the culprit?

 

[melx]

Maxx Nathaniel: I have had a severe bronchospasm reaction to Cayston months after first starting it. Unfortunately it is now consistently producing the bronchospasm and I have had to stop using Cayston. It is unfortunate because it was really helping clear the congestion.

Giggles/Jennifer: I thought you posted a question that referenced you having an adverse response to Cayston a few weeks back? Did you re-evaluate and figure something else was the culprit?

 

[melx]

Maxx Nathaniel: I have had a severe bronchospasm reaction to Cayston months after first starting it. Unfortunately it is now consistently producing the bronchospasm and I have had to stop using Cayston. It is unfortunate because it was really helping clear the congestion.
<br />
<br />Giggles/Jennifer: I thought you posted a question that referenced you having an adverse response to Cayston a few weeks back? Did you re-evaluate and figure something else was the culprit?

 

[theLostMiler]

I have heard it can cause broncospasms and sometimes not until the 3rd or 4th "on" month. I did develope some symptoms like that on my 4th month or so, but I actually attributed it to hypertonic saline (7%) and I think at my lung function its just too irritating to do more than once a day.

Are you on anything like symbicort or flonase or the purple disc one I can't think of its name?

Like TOBI or any inhaled abx or drug for that matter, its gonna be different for everyone and so it might just be too irritating for you?

The dried out feeling I feel like I know b/c when I tried inhaled pulmicort and the "a" disc-y thing (what is that called lol, mind is drawing a blank), I got tighter and when I coughed it was like I couldnt get anything up, like dried glue, not just glue that is gummy haha.

Also I sometimes lose my voice with TOBI although i never noticed it with Cayston. But I dont think the stuff is that great on vocal cords and if you are coughing a lot of dry coughing it might be adding irritation.

 

[theLostMiler]

I have heard it can cause broncospasms and sometimes not until the 3rd or 4th "on" month. I did develope some symptoms like that on my 4th month or so, but I actually attributed it to hypertonic saline (7%) and I think at my lung function its just too irritating to do more than once a day.

Are you on anything like symbicort or flonase or the purple disc one I can't think of its name?

Like TOBI or any inhaled abx or drug for that matter, its gonna be different for everyone and so it might just be too irritating for you?

The dried out feeling I feel like I know b/c when I tried inhaled pulmicort and the "a" disc-y thing (what is that called lol, mind is drawing a blank), I got tighter and when I coughed it was like I couldnt get anything up, like dried glue, not just glue that is gummy haha.

Also I sometimes lose my voice with TOBI although i never noticed it with Cayston. But I dont think the stuff is that great on vocal cords and if you are coughing a lot of dry coughing it might be adding irritation.

 

[theLostMiler]

I have heard it can cause broncospasms and sometimes not until the 3rd or 4th "on" month. I did develope some symptoms like that on my 4th month or so, but I actually attributed it to hypertonic saline (7%) and I think at my lung function its just too irritating to do more than once a day.
<br />
<br />Are you on anything like symbicort or flonase or the purple disc one I can't think of its name?
<br />
<br />Like TOBI or any inhaled abx or drug for that matter, its gonna be different for everyone and so it might just be too irritating for you?
<br />
<br />The dried out feeling I feel like I know b/c when I tried inhaled pulmicort and the "a" disc-y thing (what is that called lol, mind is drawing a blank), I got tighter and when I coughed it was like I couldnt get anything up, like dried glue, not just glue that is gummy haha.
<br />
<br />Also I sometimes lose my voice with TOBI although i never noticed it with Cayston. But I dont think the stuff is that great on vocal cords and if you are coughing a lot of dry coughing it might be adding irritation.

 

[DanG]

Going to start Cayston soon and have some questions for cayston users.
What would you say cayston does for you?
PFTs up significantly (more than if not taking it)?
Made you feel better?
Both or neither?
For those with bronchospasm or other negative side effects do you think it is overall still a positive thing for your health to do this treatment?
I had serious bronchospasm issues with TOBI and interrupted the last treatment to go on IV therapy to help with the bronchospasm. 
Thanks, Danny
40, df508x2, cfrd, cfra...
 

 

[DanG]

Going to start Cayston soon and have some questions for cayston users.
What would you say cayston does for you?
PFTs up significantly (more than if not taking it)?
Made you feel better?
Both or neither?
For those with bronchospasm or other negative side effects do you think itis overall stilla positive thing for your health to do this treatment?
I had serious bronchospasm issues with TOBI and interrupted the last treatment to go on IV therapy to help with the bronchospasm.
Thanks, Danny
40, df508x2, cfrd, cfra...

 

[DanG]

<p>Going to start Cayston soon and have some questions for cayston users.
<p>What would you say cayston does for you?
<p>PFTs up significantly (more than if not taking it)?
<p>Made you feel better?
<p>Both or neither?
<p>For those with bronchospasm or other negative side effects do you think itis overall stilla positive thing for your health to do this treatment?
<p>I had serious bronchospasm issues with TOBI and interrupted the last treatment to go on IV therapy to help with the bronchospasm.
<p>Thanks, Danny
<p>40, df508x2, cfrd, cfra...
<p>

 

[theLostMiler]

I had no improvement with PFTs. I generally feel better while on it, ie: mucus slightly less green, sometimes less fevers.

With my weird side effects, I chose to still keep doing it until I could exactly determine if it was the Cayston. For me at that time, the pros still outweighed the cons.

I do TOBI/Cayston on/off months so when I am not on Cayston I am on TOBI, and I believe that regimen (actually once doing 3 months straight of Cayson) has helped 'maintain' the psuedo and b. cepecia growth in my lungs.

 

[theLostMiler]

I had no improvement with PFTs. I generally feel better while on it, ie: mucus slightly less green, sometimes less fevers.

With my weird side effects, I chose to still keep doing it until I could exactly determine if it was the Cayston. For me at that time, the pros still outweighed the cons.

I do TOBI/Cayston on/off months so when I am not on Cayston I am on TOBI, and I believe that regimen (actually once doing 3 months straight of Cayson) has helped 'maintain' the psuedo and b. cepecia growth in my lungs.

 

[theLostMiler]

I had no improvement with PFTs. I generally feel better while on it, ie: mucus slightly less green, sometimes less fevers.
<br />
<br />With my weird side effects, I chose to still keep doing it until I could exactly determine if it was the Cayston. For me at that time, the pros still outweighed the cons.
<br />
<br />I do TOBI/Cayston on/off months so when I am not on Cayston I am on TOBI, and I believe that regimen (actually once doing 3 months straight of Cayson) has helped 'maintain' the psuedo and b. cepecia growth in my lungs.
<br />
<br />