Cayston

[wifewithcf]

Hi everyone!

My wife has just received the new drug Cayston and starts nebulizing tomorrow. I was just curious if anyone here is on this drug and if so their thoughts?

 

[wifewithcf]

Hi everyone!

My wife has just received the new drug Cayston and starts nebulizing tomorrow. I was just curious if anyone here is on this drug and if so their thoughts?

 

[wifewithcf]

Hi everyone!
<br />
<br />My wife has just received the new drug Cayston and starts nebulizing tomorrow. I was just curious if anyone here is on this drug and if so their thoughts?

 

[bethylove]

I would love to chime in on this post.
I just finished my Tobi month and started cayston about 4 days ago. So far I am in LOVE. It is SO quick to neb, and its absolutely noiseless. It takes longer to clean the nebulizer each time then to neb it! haha.

I was a little skeptical about doing 3 times a day, but I think that's been making a great difference in how I feel. Like I stated before, I'm only on my 4th or 5th day of the drug, but already I'm feeling better. I had started out really junkie, having fevers, coughing up a storm -- to the point of throwing up-- but for the past 2/3 days I haven't had any fevers, my coughing has died down tremendously, I haven't thrown up, and I've been feeling worlds different. I'm not sure if this has to with cayston or not, but I feel it does, because it's the only thing I've changed in my routine. I think having the medicine delivered in such an effective manner really makes a difference in killing off the growing buggies.

The first dose made me cough the whole time, and it was extremely hard to me to neb it. What would happen is I would cough from the medicine, and in turn my mouth would leave the mouthpiece, and the medicine pools up in the neb. chamber. Well, when I finished coughing I'd go to breathe in to get all the medicine I hadn't inhaled in the past 20 seconds, in one breathe, and the coughing cycle would start again, etc. But I found that if I really concentrate and take slower breaths, I don't cough as much, and when I do cough I try to keep my mouth on the mouthpiece and inhale while coughing through it so I"m still evenly getting the med. (Did this last paragraph even make sense???? haha) That was the only problem I found with it.

Other than that, I'm in love! I can't wait till the end of the month to see if I'm still feeling as great as I am in these first few days, or better, and I can't wait to do PFT's. =)

Hope Kristen likes it as much as I do!!! (And if she's anything like me, she'll be bummed she can't do ALL her meds in the Altera)

 

[bethylove]

I would love to chime in on this post.
I just finished my Tobi month and started cayston about 4 days ago. So far I am in LOVE. It is SO quick to neb, and its absolutely noiseless. It takes longer to clean the nebulizer each time then to neb it! haha.

I was a little skeptical about doing 3 times a day, but I think that's been making a great difference in how I feel. Like I stated before, I'm only on my 4th or 5th day of the drug, but already I'm feeling better. I had started out really junkie, having fevers, coughing up a storm -- to the point of throwing up-- but for the past 2/3 days I haven't had any fevers, my coughing has died down tremendously, I haven't thrown up, and I've been feeling worlds different. I'm not sure if this has to with cayston or not, but I feel it does, because it's the only thing I've changed in my routine. I think having the medicine delivered in such an effective manner really makes a difference in killing off the growing buggies.

The first dose made me cough the whole time, and it was extremely hard to me to neb it. What would happen is I would cough from the medicine, and in turn my mouth would leave the mouthpiece, and the medicine pools up in the neb. chamber. Well, when I finished coughing I'd go to breathe in to get all the medicine I hadn't inhaled in the past 20 seconds, in one breathe, and the coughing cycle would start again, etc. But I found that if I really concentrate and take slower breaths, I don't cough as much, and when I do cough I try to keep my mouth on the mouthpiece and inhale while coughing through it so I"m still evenly getting the med. (Did this last paragraph even make sense???? haha) That was the only problem I found with it.

Other than that, I'm in love! I can't wait till the end of the month to see if I'm still feeling as great as I am in these first few days, or better, and I can't wait to do PFT's. =)

Hope Kristen likes it as much as I do!!! (And if she's anything like me, she'll be bummed she can't do ALL her meds in the Altera)

 

[bethylove]

I would love to chime in on this post.
<br />I just finished my Tobi month and started cayston about 4 days ago. So far I am in LOVE. It is SO quick to neb, and its absolutely noiseless. It takes longer to clean the nebulizer each time then to neb it! haha.
<br />
<br />I was a little skeptical about doing 3 times a day, but I think that's been making a great difference in how I feel. Like I stated before, I'm only on my 4th or 5th day of the drug, but already I'm feeling better. I had started out really junkie, having fevers, coughing up a storm -- to the point of throwing up-- but for the past 2/3 days I haven't had any fevers, my coughing has died down tremendously, I haven't thrown up, and I've been feeling worlds different. I'm not sure if this has to with cayston or not, but I feel it does, because it's the only thing I've changed in my routine. I think having the medicine delivered in such an effective manner really makes a difference in killing off the growing buggies.
<br />
<br />The first dose made me cough the whole time, and it was extremely hard to me to neb it. What would happen is I would cough from the medicine, and in turn my mouth would leave the mouthpiece, and the medicine pools up in the neb. chamber. Well, when I finished coughing I'd go to breathe in to get all the medicine I hadn't inhaled in the past 20 seconds, in one breathe, and the coughing cycle would start again, etc. But I found that if I really concentrate and take slower breaths, I don't cough as much, and when I do cough I try to keep my mouth on the mouthpiece and inhale while coughing through it so I"m still evenly getting the med. (Did this last paragraph even make sense???? haha) That was the only problem I found with it.
<br />
<br />Other than that, I'm in love! I can't wait till the end of the month to see if I'm still feeling as great as I am in these first few days, or better, and I can't wait to do PFT's. =)
<br />
<br />Hope Kristen likes it as much as I do!!! (And if she's anything like me, she'll be bummed she can't do ALL her meds in the Altera)

 

[scanboyd]

Good morning.

I would like to know what your pfts are after taking the Cayston for a month.

Please share if you do not mind.

I am considering Cayston myself.

Thanks.

 

[scanboyd]

Good morning.

I would like to know what your pfts are after taking the Cayston for a month.

Please share if you do not mind.

I am considering Cayston myself.

Thanks.

 

[scanboyd]

Good morning.
<br />
<br />I would like to know what your pfts are after taking the Cayston for a month.
<br />
<br />Please share if you do not mind.
<br />
<br />I am considering Cayston myself.
<br />
<br />Thanks.

 

[LouLou]

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.

 

[LouLou]

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.

 

[LouLou]

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.

 

[carly23]

Hello so im on my 5th day of cayston today : ) and i gota say i reaaaly like it. My coughin in the mornings and almost being sick has disapeared!!i dont feel so junky either like deep in my lungs and it does make me cough alot but over all i do reallly love this medicene.I see my cf doc the 27th and i really hope it has helped bring my pft's up! As I was told my FEV 1 is 37% <img src="i/expressions/face-icon-small-sad.gif" border="0"> im complying with all my breathing meds for the first year of my life i was one of the ones who didnt think i needed to do them as i always looked at myself as not the sick one but now its getting the better of me but im not giving up!! : ) i have hope and all i want to do is get my numbers up!But i will say after 5days of doing this medicene i do have a dam stinking head cold <img src="i/expressions/face-icon-small-sad.gif" border="0"> im blocked up cant breathe out my nose!lol anyone know what i could do for this to help get some relief??<img src="i/expressions/face-icon-small-smile.gif" border="0"> thanks

 

[carly23]

Hello so im on my 5th day of cayston today : ) and i gota say i reaaaly like it. My coughin in the mornings and almost being sick has disapeared!!i dont feel so junky either like deep in my lungs and it does make me cough alot but over all i do reallly love this medicene.I see my cf doc the 27th and i really hope it has helped bring my pft's up! As I was told my FEV 1 is 37% <img src="i/expressions/face-icon-small-sad.gif" border="0"> im complying with all my breathing meds for the first year of my life i was one of the ones who didnt think i needed to do them as i always looked at myself as not the sick one but now its getting the better of me but im not giving up!! : ) i have hope and all i want to do is get my numbers up!But i will say after 5days of doing this medicene i do have a dam stinking head cold <img src="i/expressions/face-icon-small-sad.gif" border="0"> im blocked up cant breathe out my nose!lol anyone know what i could do for this to help get some relief??<img src="i/expressions/face-icon-small-smile.gif" border="0"> thanks

 

[carly23]

Hello so im on my 5th day of cayston today : ) and i gota say i reaaaly like it. My coughin in the mornings and almost being sick has disapeared!!i dont feel so junky either like deep in my lungs and it does make me cough alot but over all i do reallly love this medicene.I see my cf doc the 27th and i really hope it has helped bring my pft's up! As I was told my FEV 1 is 37% <img src="i/expressions/face-icon-small-sad.gif" border="0"> im complying with all my breathing meds for the first year of my life i was one of the ones who didnt think i needed to do them as i always looked at myself as not the sick one but now its getting the better of me but im not giving up!! : ) i have hope and all i want to do is get my numbers up!But i will say after 5days of doing this medicene i do have a dam stinking head cold <img src="i/expressions/face-icon-small-sad.gif" border="0"> im blocked up cant breathe out my nose!lol anyone know what i could do for this to help get some relief??<img src="i/expressions/face-icon-small-smile.gif" border="0"> thanks

 

[bethylove]

Hi Everyone,

So my PFTs before cayston were 64% then. I started cayston - felt awesome, and was doing so much gained about 6lbs.... then my 28 days were up and started tobi. From the two weeks that I was on tobi, and had stopped cayston I just slid downhill so fast! I lost all 6 lbs plus some -- all the crappy feelings were back and I was READYYY for antibiotics. So when I went in for my PFTS I was expecting them to be way down since I was feeling so horrible and having fevers everyday -- but my PFTs were still 64%! Which means they MUST have gone up (and quite a bit too) while I was on Cayston. I can't say for sure, but I"m 99% positive my PFTS went up.

And LouLou I also culture MRSA along with PA. I, too always find that if I just kill off pseudo. then I feel sicker because MRSA just flourishes in the empty space -- but that said, I still felt AMAZING on cayston. I just think it was more effective than the other inhaled antibiotics. I'm sorry you have needed IVS at the end of each cycle =(

 

[bethylove]

Hi Everyone,

So my PFTs before cayston were 64% then. I started cayston - felt awesome, and was doing so much gained about 6lbs.... then my 28 days were up and started tobi. From the two weeks that I was on tobi, and had stopped cayston I just slid downhill so fast! I lost all 6 lbs plus some -- all the crappy feelings were back and I was READYYY for antibiotics. So when I went in for my PFTS I was expecting them to be way down since I was feeling so horrible and having fevers everyday -- but my PFTs were still 64%! Which means they MUST have gone up (and quite a bit too) while I was on Cayston. I can't say for sure, but I"m 99% positive my PFTS went up.

And LouLou I also culture MRSA along with PA. I, too always find that if I just kill off pseudo. then I feel sicker because MRSA just flourishes in the empty space -- but that said, I still felt AMAZING on cayston. I just think it was more effective than the other inhaled antibiotics. I'm sorry you have needed IVS at the end of each cycle =(

 

[bethylove]

Hi Everyone,
<br />
<br />So my PFTs before cayston were 64% then. I started cayston - felt awesome, and was doing so much gained about 6lbs.... then my 28 days were up and started tobi. From the two weeks that I was on tobi, and had stopped cayston I just slid downhill so fast! I lost all 6 lbs plus some -- all the crappy feelings were back and I was READYYY for antibiotics. So when I went in for my PFTS I was expecting them to be way down since I was feeling so horrible and having fevers everyday -- but my PFTs were still 64%! Which means they MUST have gone up (and quite a bit too) while I was on Cayston. I can't say for sure, but I"m 99% positive my PFTS went up.
<br />
<br />And LouLou I also culture MRSA along with PA. I, too always find that if I just kill off pseudo. then I feel sicker because MRSA just flourishes in the empty space -- but that said, I still felt AMAZING on cayston. I just think it was more effective than the other inhaled antibiotics. I'm sorry you have needed IVS at the end of each cycle =(

 

[mom2lillian]

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.

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.

 

[mom2lillian]

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.

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.