Cayston cough

rubyroselee · Sep 5, 2011

I just started a new routine of alternating Tobra with Cayston. I was only on Cayston once before and I really liked it and thought it worked well. I'm excited about this new routine because now I will never have an "off" period and hopefully that will keep me feeling good!
 
However, I have a nagging cough because of it. I'm sure it's from the Cayston because that's one of the more common side effects and it's not my normal CF cough. As soon as I start the treatment, I can feel the annoying tickle in my chest and it starts. It's worse right after the treatment but the annoying cough lingers for the whole entire day. I even got a headache today from all of the coughing, and occasionally it's even causing me a big of lung pain too (from the coughing). I have even been waking up in the night with the cough. The good thing is, it's more of a dry cough and my lungs actually feel very good CF-wise. 
 
Is anyone else experiencing this annoying side effect and is there any way to help it? 
 
I am crossing my fingers that this will not be my experience for every month that I'm on it, but I have a feeling that this might be the way it's going to be. And this Cayston cough may even be enough for me to say it isn't worth it to do on a regular basis. Frustrated...

rubyroselee · Sep 5, 2011

I just started a new routine of alternating Tobra with Cayston. I was only on Cayston once before and I really liked it and thought it worked well. I'm excited about this new routine because now I will never have an "off" period and hopefully that will keep me feeling good!

However, I have a nagging cough because of it. I'm sure it's from the Cayston because that's one of the more common side effects and it's not my normal CF cough. As soon as I start the treatment, I can feel the annoying ticklein my chest and it starts. It's worse right after the treatment but the annoying cough lingers for the whole entire day. I even got a headache today from all of the coughing, and occasionally it's even causing me a big of lung pain too (from the coughing). I have even been waking up in the night with the cough. The good thing is, it's more of a dry cough and my lungs actually feel very good CF-wise. 

Is anyone else experiencing this annoying side effect and is there any way to help it? 

I am crossing my fingers that this will not be my experience for every month that I'm on it, but I have a feeling that this might be the way it's going to be.And this Cayston cough may even be enough for me to say it isn't worth it to do on a regular basis. Frustrated...

rubyroselee · Sep 5, 2011

I just started a new routine of alternating Tobra with Cayston. I was only on Cayston once before and I really liked it and thought it worked well. I'm excited about this new routine because now I will never have an "off" period and hopefully that will keep me feeling good!

However, I have a nagging cough because of it. I'm sure it's from the Cayston because that's one of the more common side effects and it's not my normal CF cough. As soon as I start the treatment, I can feel the annoying ticklein my chest and it starts. It's worse right after the treatment but the annoying cough lingers for the whole entire day. I even got a headache today from all of the coughing, and occasionally it's even causing me a big of lung pain too (from the coughing). I have even been waking up in the night with the cough. The good thing is, it's more of a dry cough and my lungs actually feel very good CF-wise. 

Is anyone else experiencing this annoying side effect and is there any way to help it? 

I am crossing my fingers that this will not be my experience for every month that I'm on it, but I have a feeling that this might be the way it's going to be.And this Cayston cough may even be enough for me to say it isn't worth it to do on a regular basis. Frustrated...

randmel89 · Sep 6, 2011

Hello,
I do suffer from a chronic cough due to Cayston. My DR decided that it would be best if I just use cayston when I am sick and not the recommened every other month. I find taking Delsym is good for helping with the cough, my DR told me about this cough suppressant and I really like it. I have had to do stronger cough med that can be giving by prescription only and it is very costly but I started coughing so hard and so mucg I began to bleed and that is when DR said no more Cayston unless I really need to clean my lungs. I hope you find something to help the cough. I wish you luck on your journey.

randmel89 · Sep 6, 2011

Hello,
I do suffer from a chronic cough due to Cayston. My DR decided that it would be best if I just use cayston when I am sick and not the recommened every other month. I find taking Delsym is good for helping with the cough, my DR told me about this cough suppressant and I really like it. I have had to do stronger cough med that can be giving by prescription only and it is very costly but I started coughing so hard and so mucg I began to bleed and that is when DR said no more Cayston unless I really need to clean my lungs. I hope you find something to help the cough. I wish you luck on your journey.

randmel89 · Sep 6, 2011

Hello,
 I do suffer from a chronic cough due to Cayston. My DR decided that it would be best if I just use cayston when I am sick and not the recommened every other month. I find taking Delsym is good for helping with the cough, my DR told me about this cough suppressant and I really like it. I have had to do stronger cough med that can be giving by prescription only and it is very costly but I started coughing so hard and so mucg I began to bleed and that is when DR said no more Cayston unless I really need to clean my lungs. I hope you find something to help the cough. I wish you luck on your journey.

rubyroselee · Sep 6, 2011

Melissa, Thanks for your input. I think I am going to call my doctor today and see if he suggests taking a cough suppressant or if it's better to keep Cayston on reserve for exacerbations only. Great advice, thank you.

rubyroselee · Sep 6, 2011

Melissa, Thanks for your input. I think I am going to call my doctor today and see if he suggests taking a cough suppressant or if it's better to keep Cayston on reserve for exacerbations only. Great advice, thank you.

rubyroselee · Sep 6, 2011

Melissa, Thanks for your input. I think I am going to call my doctor today and see if he suggests taking a cough suppressant or if it's better to keep Cayston on reserve for exacerbations only. Great advice, thank you.

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because there is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there! Oh I do albuterol before it too when I was doing it..

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because there is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there! Oh I do albuterol before it too when I was doing it..

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because there is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there! Oh I do albuterol before it too when I was doing it..

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because their is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there!

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because their is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there!

Giggles · Sep 6, 2011

That happened to me. When I first started Cayston I LOVED it! Then about a year into it, which is only 6 months cause it is every other month.... I started to get this dry cough around day 10 and it would keep me up all night long. So I stopped cayston and then few months later tried again, and again the cough. So I stopped it cause it makes me feel worse. So now I just went back to TOBI and I alternate with Colistin. Kinda disappointing since it is the new drug for CF...... Just because their is advancements does not mean it will help all CF people. VX770 is a good example too. Hang in there!

augiee · Sep 6, 2011

I also had the cough, what helped me is I'd do half of an albuttial neb before and the other half afterwards. If you are still having problems, ask for some thing that has codeine be it pills or syrup. Also the tussin that surpress cough but not have the expectorant. Will help too.

augiee · Sep 6, 2011

I also had the cough, what helped me is I'd do half of an albuttial neb before and the other half afterwards. If you are still having problems, ask for some thing that has codeine be it pills or syrup. Also the tussin that surpress cough but not have the expectorant. Will help too.

augiee · Sep 6, 2011

I also had the cough, what helped me is I'd do half of an albuttial neb before and the other half afterwards. If you are still having problems, ask for some thing that has codeine be it pills or syrup. Also the tussin that surpress cough but not have the expectorant. Will help too.

phutton · Sep 8, 2011

Same thing happened to me. Just like the previous post I use a cough suppressant. Just started my Cayston month today<img src="i/expressions/face-icon-small-smile.gif" border="0">

phutton · Sep 8, 2011

Same thing happened to me. Just like the previous post I use a cough suppressant. Just started my Cayston month today<img src="i/expressions/face-icon-small-smile.gif" border="0">

Cayston cough

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