Cayston

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mom2lillian

New member
I really love it, the first week or so I was so junky and getting up alot that I felt worse. I also coughed alot iwth the first doses, now I can control my breathing and am more used to it so I rarely cough when taking it.
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<br />I am not sure of my PFT's but my peak flow is tracking at the top of my green zone and I have feel very cleaned out and am getting things out I wouldnt normally.
 
K

KMV77

New member
I havent heard of this drug. I'm interested in it learning more. I'll have to ask my doc when I go back too. Can it be used long term, or is it one month on and one off?

Mom2lillian...how did you raise your fev1 in the 2 months? I'm interested to know.
Kevin
 
K

KMV77

New member
I havent heard of this drug. I'm interested in it learning more. I'll have to ask my doc when I go back too. Can it be used long term, or is it one month on and one off?

Mom2lillian...how did you raise your fev1 in the 2 months? I'm interested to know.
Kevin
 
K

KMV77

New member
I havent heard of this drug. I'm interested in it learning more. I'll have to ask my doc when I go back too. Can it be used long term, or is it one month on and one off?
<br />
<br />Mom2lillian...how did you raise your fev1 in the 2 months? I'm interested to know.
<br />Kevin
 
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trentparrishracing43

New member
well i have psuedomonas and mrsa just got done with my first dose couldnt keep 3 times every day but for most part i feel better but next month i should be adjusted to the 3 times thing and th 28th of this month i go back for a check up but i've been doing good for a while i have not been in the hospital for over a year now and my lung function last visit was 68 over 63 so i'll see if i'm any better but i know i would have got a whole lot greatter results if i had kep it 3 times everyday ): but i really like it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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trentparrishracing43

New member
well i have psuedomonas and mrsa just got done with my first dose couldnt keep 3 times every day but for most part i feel better but next month i should be adjusted to the 3 times thing and th 28th of this month i go back for a check up but i've been doing good for a while i have not been in the hospital for over a year now and my lung function last visit was 68 over 63 so i'll see if i'm any better but i know i would have got a whole lot greatter results if i had kep it 3 times everyday ): but i really like it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

trentparrishracing43

New member
well i have psuedomonas and mrsa just got done with my first dose couldnt keep 3 times every day but for most part i feel better but next month i should be adjusted to the 3 times thing and th 28th of this month i go back for a check up but i've been doing good for a while i have not been in the hospital for over a year now and my lung function last visit was 68 over 63 so i'll see if i'm any better but i know i would have got a whole lot greatter results if i had kep it 3 times everyday ): but i really like it <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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MiddleAgedLady

Guest
I culture MRSA and Cayston made me feel SO much better! Honestly, I could feel the difference after the first two days. I was fighting a sinus infection when I started Cayston and knew I was starting to get pretty sick. After the first two days, my wheezes were gone. but the best part of all was I had more ENERGY!! I suffer from a lot of fatigue so this is huge for me. I also coughed up a ton of stuff, some of it old-looking.; I continued to cough up about a week after I stopped it. I'm disappointed that I didn't have a clinic appt to see how much my PFTs came up but I have no doubts that they improved. I am counting the days until I can get back on the drug (14!).
 
M

MiddleAgedLady

Guest
I culture MRSA and Cayston made me feel SO much better! Honestly, I could feel the difference after the first two days. I was fighting a sinus infection when I started Cayston and knew I was starting to get pretty sick. After the first two days, my wheezes were gone. but the best part of all was I had more ENERGY!! I suffer from a lot of fatigue so this is huge for me. I also coughed up a ton of stuff, some of it old-looking.; I continued to cough up about a week after I stopped it. I'm disappointed that I didn't have a clinic appt to see how much my PFTs came up but I have no doubts that they improved. I am counting the days until I can get back on the drug (14!).
 
M

MiddleAgedLady

Guest
I culture MRSA and Cayston made me feel SO much better! Honestly, I could feel the difference after the first two days. I was fighting a sinus infection when I started Cayston and knew I was starting to get pretty sick. After the first two days, my wheezes were gone. but the best part of all was I had more ENERGY!! I suffer from a lot of fatigue so this is huge for me. I also coughed up a ton of stuff, some of it old-looking.; I continued to cough up about a week after I stopped it. I'm disappointed that I didn't have a clinic appt to see how much my PFTs came up but I have no doubts that they improved. I am counting the days until I can get back on the drug (14!).
 
I

intheIMAGEofHim

New member
I'm just about to finish up tobi and start on Cayston (for the first time). I'm a bit worried because I haven't been able to get over a could and I might have to get back on IV's. I'm really hoping the Cayston will help!
 
I

intheIMAGEofHim

New member
I'm just about to finish up tobi and start on Cayston (for the first time). I'm a bit worried because I haven't been able to get over a could and I might have to get back on IV's. I'm really hoping the Cayston will help!
 
I

intheIMAGEofHim

New member
I'm just about to finish up tobi and start on Cayston (for the first time). I'm a bit worried because I haven't been able to get over a could and I might have to get back on IV's. I'm really hoping the Cayston will help!
 
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mikefab

New member
I was on Cayston when it was a study drug and it caused bleeding for me so i had to stop the study. Not sure how it would affect me now. Supposedly the other patient at my doctors office at my clinic had bleeding too so she had to stop also. I actually have a question for people on cayston too, my doctor recently wanted to put me on it because he felt it would benefit me and i was all for trying it again, but insurance wanted a 30% copay which was still $1000. Does anyone with horizon blue cross blue shield insurance have cayston and gott it cheaply? I can't afford to pay that much for a drug that might cause me to bleed again.
 
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mikefab

New member
I was on Cayston when it was a study drug and it caused bleeding for me so i had to stop the study. Not sure how it would affect me now. Supposedly the other patient at my doctors office at my clinic had bleeding too so she had to stop also. I actually have a question for people on cayston too, my doctor recently wanted to put me on it because he felt it would benefit me and i was all for trying it again, but insurance wanted a 30% copay which was still $1000. Does anyone with horizon blue cross blue shield insurance have cayston and gott it cheaply? I can't afford to pay that much for a drug that might cause me to bleed again.
 
M

mikefab

New member
I was on Cayston when it was a study drug and it caused bleeding for me so i had to stop the study. Not sure how it would affect me now. Supposedly the other patient at my doctors office at my clinic had bleeding too so she had to stop also. I actually have a question for people on cayston too, my doctor recently wanted to put me on it because he felt it would benefit me and i was all for trying it again, but insurance wanted a 30% copay which was still $1000. Does anyone with horizon blue cross blue shield insurance have cayston and gott it cheaply? I can't afford to pay that much for a drug that might cause me to bleed again.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

I have not had success with Cayston thus far. In fact we are still evaluating if it may be contradictory to my care. At the end of a 28 day cycle, TWICE, I've been so ill I had to start IVs. I culture MRSA and wonder if it kills the PA giving way for the MRSA to dominate. Has anyone had success with it while also culturing MRSA? I wish something would come out that could treat both MRSA and PA simultaneously prophylactically.</end quote></div>

Amen. Same problem here *pokes blog*
I have had fevers and such, I'm on my third day of it, and so far it's so draining I haven't been able to do anything productive really. Hopefully I'll get at least as good as I was before so I can do stuff, but the TWO centers I see want me doing this so bad I feel almost trapped.

Mike- All the docs think this is some freakin "miracle" drug, and if it made you bleed, I'd personally say it's not worth the risk, But I have blue cross (hate them) and getting it through foundation care they were able to negotiate down the price with blue cross.
 
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tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

I have not had success with Cayston thus far. In fact we are still evaluating if it may be contradictory to my care. At the end of a 28 day cycle, TWICE, I've been so ill I had to start IVs. I culture MRSA and wonder if it kills the PA giving way for the MRSA to dominate. Has anyone had success with it while also culturing MRSA? I wish something would come out that could treat both MRSA and PA simultaneously prophylactically.</end quote>

Amen. Same problem here *pokes blog*
I have had fevers and such, I'm on my third day of it, and so far it's so draining I haven't been able to do anything productive really. Hopefully I'll get at least as good as I was before so I can do stuff, but the TWO centers I see want me doing this so bad I feel almost trapped.

Mike- All the docs think this is some freakin "miracle" drug, and if it made you bleed, I'd personally say it's not worth the risk, But I have blue cross (hate them) and getting it through foundation care they were able to negotiate down the price with blue cross.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
<br />
<br />I have not had success with Cayston thus far. In fact we are still evaluating if it may be contradictory to my care. At the end of a 28 day cycle, TWICE, I've been so ill I had to start IVs. I culture MRSA and wonder if it kills the PA giving way for the MRSA to dominate. Has anyone had success with it while also culturing MRSA? I wish something would come out that could treat both MRSA and PA simultaneously prophylactically.</end quote>
<br />
<br />Amen. Same problem here *pokes blog*
<br />I have had fevers and such, I'm on my third day of it, and so far it's so draining I haven't been able to do anything productive really. Hopefully I'll get at least as good as I was before so I can do stuff, but the TWO centers I see want me doing this so bad I feel almost trapped.
<br />
<br />Mike- All the docs think this is some freakin "miracle" drug, and if it made you bleed, I'd personally say it's not worth the risk, But I have blue cross (hate them) and getting it through foundation care they were able to negotiate down the price with blue cross.
 
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