Have you seen a improvement in your FEV1 with Cayston if so how much??

scanboyd

Member
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.
 

scanboyd

Member
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.
 

scanboyd

Member
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">
 

scanboyd

Member
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.
 

scanboyd

Member
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.
 

scanboyd

Member
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.
 

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.
 

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.
 

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.
 

jpetersen

New member
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.
 

jpetersen

New member
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.
 

jpetersen

New member
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.
 

Jeana

New member
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">
 

Jeana

New member
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">
 

Jeana

New member
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
 
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