I konw the manf. states 8% poss. improvement in FEV1 with cayston. It would be good if some folks that are already using it, share if they saw a improvement in there pul. function. The Dr. at UAB suggested in my off months from Tobi to use Cayston. All info regarding Cayson would be helpful.
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Have you seen a improvement in your FEV1 with Cayston if so how much??
- Thread starter scanboyd
- Start date
I konw the manf. states 8% poss. improvement in FEV1 with cayston. It would be good if some folks that are already using it, share if they saw a improvement in there pul. function. The Dr. at UAB suggested in my off months from Tobi to use Cayston. All info regarding Cayson would be helpful.
I konw the manf. states 8% poss. improvement in FEV1 with cayston. It would be good if some folks that are already using it, share if they saw a improvement in there pul. function. The Dr. at UAB suggested in my off months from Tobi to use Cayston. All info regarding Cayson would be helpful.
rubyroselee
New member
I was wondering about this as well. I see that you haven't got any responses, so maybe you should post this in the Adults section. I recently had an exacerbation and went on Colistin, but I want to try Cayston next time...or maybe even do Cayston on the off-tobi time. Let me know if you find out anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
rubyroselee
New member
I was wondering about this as well. I see that you haven't got any responses, so maybe you should post this in the Adults section. I recently had an exacerbation and went on Colistin, but I want to try Cayston next time...or maybe even do Cayston on the off-tobi time. Let me know if you find out anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
rubyroselee
New member
I was wondering about this as well. I see that you haven't got any responses, so maybe you should post this in the Adults section. I recently had an exacerbation and went on Colistin, but I want to try Cayston next time...or maybe even do Cayston on the off-tobi time. Let me know if you find out anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
Good Morning Rubroselee,
I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
Good Morning Rubroselee,
I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
Good Morning Rubroselee,
<br />
<br />I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
<br />
<br />I did post it in the Adult section as well as Adults with CF. Have yet to see anyone with the 8%+ or infact I have not seen any one with improvement in Fev1. The cost and time it takes to take a additional neb. drug makes me wonder if it is worth the effort with what I have seen thus far.
BaylorCrew07
New member
I recently posted a blog about my experience w/ Cayston, which I would rate as 'not-so-positive.' I have not been back to my clinic yet for PFTs, but Cayston made me very short of breath. I was also nauseous/lost my appetite the 1st week or 2 on Cayston, then that went away - and it may not have been related to the Cayston at all, who knows.
The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
BaylorCrew07
New member
I recently posted a blog about my experience w/ Cayston, which I would rate as 'not-so-positive.' I have not been back to my clinic yet for PFTs, but Cayston made me very short of breath. I was also nauseous/lost my appetite the 1st week or 2 on Cayston, then that went away - and it may not have been related to the Cayston at all, who knows.
The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
BaylorCrew07
New member
I recently posted a blog about my experience w/ Cayston, which I would rate as 'not-so-positive.' I have not been back to my clinic yet for PFTs, but Cayston made me very short of breath. I was also nauseous/lost my appetite the 1st week or 2 on Cayston, then that went away - and it may not have been related to the Cayston at all, who knows.
<br />
<br />The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
<br />
<br />Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
<br />
<br />I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
<br />
<br />The shortness of breath, however, I do feel was related, because went I finished Cayston I felt 110% better than when I was on it. Granted, this is just MY experience; it may work great for some people.
<br />
<br />Price was not really too much of an issue for me, I qualified for assistance, so I paid $25 (or $28? something like that) for Cayston, and they also included the Altera, Nuk, soap & ziplock containers to clean them with.
<br />
<br />I hate TOBI, but right now it seems like it is probably a better option for me than Cayston.
My highest PFTs in over 3 years was on my 30 minutes post-Cayston PFT during the trial after 28 days on Cayston, which took me from about 31% to 38% in a month, but then I bombed on the next drug trial I tried and had to start my PFT build-up all over again. Expect it to go down on the off month and maybe develop a wheeze, but control that however you can with airway clearance and bronchodilators until the next month. My PFTs are going up each visit now.
My highest PFTs in over 3 years was on my 30 minutes post-Cayston PFT during the trial after 28 days on Cayston, which took me from about 31% to 38% in a month, but then I bombed on the next drug trial I tried and had to start my PFT build-up all over again. Expect it to go down on the off month and maybe develop a wheeze, but control that however you can with airway clearance and bronchodilators until the next month. My PFTs are going up each visit now.
My highest PFTs in over 3 years was on my 30 minutes post-Cayston PFT during the trial after 28 days on Cayston, which took me from about 31% to 38% in a month, but then I bombed on the next drug trial I tried and had to start my PFT build-up all over again. Expect it to go down on the off month and maybe develop a wheeze, but control that however you can with airway clearance and bronchodilators until the next month. My PFTs are going up each visit now.
I was on it during the drug study and saw my PA go away for about a year or so. I had to exit the drug study because I no longer cultured PA. I had cultured PA for 10+ years prior to the study. I don't know that my FEV1 raised dramatically, but it hasn't declined in the last 10 years, so all these drug studies must be helping me do something right. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was on it during the drug study and saw my PA go away for about a year or so. I had to exit the drug study because I no longer cultured PA. I had cultured PA for 10+ years prior to the study. I don't know that my FEV1 raised dramatically, but it hasn't declined in the last 10 years, so all these drug studies must be helping me do something right. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was on it during the drug study and saw my PA go away for about a year or so. I had to exit the drug study because I no longer cultured PA. I had cultured PA for 10+ years prior to the study. I don't know that my FEV1 raised dramatically, but it hasn't declined in the last 10 years, so all these drug studies must be helping me do something right. <img src="i/expressions/face-icon-small-smile.gif" border="0">
W
windex125
Guest
My Cayston med and supplies arrived yest, what the heck there seems to be alot involved to nebulize what did I get myself into, this just seems like way too much.I did not read anything yet, just packed it all away in the neat bag to carry it all, I have to arrange a lesson with my Dr. but I now do 3 treaments a day 3 albuterol 1 pulmozyme, vest 30-45 mins a day as well now to try to fit this in as well? I am freaking out just lookg at the pile of it all.I think I shd of just went on IV's ..... womam 55 CF/MAC/staph/one lung
W
windex125
Guest
My Cayston med and supplies arrived yest, what the heck there seems to be alot involved to nebulize what did I get myself into, this just seems like way too much.I did not read anything yet, just packed it all away in the neat bag to carry it all, I have to arrange a lesson with my Dr. but I now do 3 treaments a day 3 albuterol 1 pulmozyme, vest 30-45 mins a day as well now to try to fit this in as well? I am freaking out just lookg at the pile of it all.I think I shd of just went on IV's ..... womam 55 CF/MAC/staph/one lung