So I have been on Cayston since last January and at first it felt like Cayston was AWESOME. Now I feel worse on my Cayston months than my Colistin months. It seems the Cayston makes me wheezy, congested and tight chest feeling. The symptoms are most bothersome late in the day and into the evening and forget trying to sleep at night. Does anyone else notice this and what then are you doing? Are you stopping Cayston? I could go back to TOBI but started Cayston cause my TOBI months I did not feel as good... UGH. What to do?
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Cayston Users
- Thread starter Giggles
- Start date
So I have been on Cayston since last January and at first it felt like Cayston was AWESOME. Now I feel worse on my Cayston months than my Colistin months. It seems the Cayston makes me wheezy, congested and tight chest feeling. The symptoms are most bothersome late in the day and into the evening and forget trying to sleep at night. Does anyone else notice this and what then are you doing? Are you stopping Cayston? I could go back to TOBI but started Cayston cause my TOBI months I did not feel as good... UGH. What to do?
So I have been on Cayston since last January and at first it felt like Cayston was AWESOME. Now I feel worse on my Cayston months than my Colistin months. It seems the Cayston makes me wheezy, congested and tight chest feeling. The symptoms are most bothersome late in the day and into the evening and forget trying to sleep at night. Does anyone else notice this and what then are you doing? Are you stopping Cayston? I could go back to TOBI but started Cayston cause my TOBI months I did not feel as good... UGH. What to do?
D
Deb
Guest
I have been on Cayston since it was made available. I've neither noticed a big positive change or the negative effects that you mentioned. I have severe hearing loss in one ear due to IV Tobramycin so I now can't do TOBI nebs. I have only been on Colistin once for a month.
D
Deb
Guest
I have been on Cayston since it was made available. I've neither noticed a big positive change or the negative effects that you mentioned. I have severe hearing loss in one ear due to IV Tobramycin so I now can't do TOBI nebs. I have only been on Colistin once for a month.
D
Deb
Guest
I have been on Cayston since it was made available. I've neither noticed a big positive change or the negative effects that you mentioned. I have severe hearing loss in one ear due to IV Tobramycin so I now can't do TOBI nebs. I have only been on Colistin once for a month.
F
fuddlynn
Guest
Interested in hearing your feedback melx
I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?
I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?
F
fuddlynn
Guest
Interested in hearing your feedback melx
I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?
I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?
F
fuddlynn
Guest
Interested in hearing your feedback melx
<p>I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
<p>After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
<p>The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
<p>Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?
<p>I started Cayston about 1 weeks ago because my PFT's FEV1 had declined and I have PA (although it has never caused me any problems). I've always been incredibly active and healthy but I do tend to get sick each early spring due to seasonal allergies and it tends to work down into my lungs requiring a 2 week round of TOBI.
<p>After about 10 days taking Cayston I have coined a new term that I call "The Cayston Cough" which is basically harsh broncho-spasm. I am 3 weeks out of surgery with a 5 inch incision in my stomach making coughing very painful (although I am starting to be able to tolerate coughing).
<p>The last several nights I wake up somewhere between 2am and 4am wheezing like crazy and have to get out of bed, close my bedroom door so I won't disturb my wife and I go downstairs and spend another hour coughing up mucos while doing manual aiway clearance. This whole process usually keeps me out of bed for about 2+hours and it is starting to catch up with me by giving me a headache and leaving me tired all day.
<p>Although breathing is irritating throughout the day, I don't have a productive cough any other time than during my sleeping hours. I wonder if Cayston is moving PA which has never been touched by any other drug so maybe all this is worth putting up with and maybe I will have increased FEV1. Just not sure I can tolerate the issues I am experiencing and wonder if you mind sharing the feedback you shared with Jennifer?