Cayston

[mamaScarlett]

Its a bit too soon for me to tell how Cayston affected me. I only did one month of it so far.
<br />Within a week of starting it, I felt so much better. My morning spasms just stopped. Unfortunately this past month was one of the most stressful months I've had due to circumstances out of my control, and by the end of the month, my lungs were feeling it.
<br />So I could say that if it wasn't for me being on Cayston, I'm SURE I would've gotten sick this month. I wasn't able to get a post pft to asses where I'm at. When I'm that badly stressed, there's no point in me having a pft done bc I know it won't be good.
<br />I'm sure Cayston helped me this past month, but how much I don't know. One thing, its not any miracle, not yet at least.

 

[jmiller]

I have a few questions for the posters on this thread. I am on Day 3 of Cayston...

So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.

LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jmiller]

I have a few questions for the posters on this thread. I am on Day 3 of Cayston...

So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.

LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jmiller]

I have a few questions for the posters on this thread. I am on Day 3 of Cayston...
<br />
<br />So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.
<br />
<br />LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

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

I have a few questions for the posters on this thread. I am on Day 3 of Cayston.

So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.

LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src=""></end quote></div>

I believe it is recommended to sterilize after each use. DO NOT USE A WET NEB THOUGH! I have the germ guardian to help dry my parts if I am in a hurry. I do not use it to sterilize though as mom2lillian tested it and found it didn't do a good job. I have 2 nebulizers. I use the same one for AM & mid day without cleaning it and then I use the 2nd sterile neb for my PM treatment. I am getting it through CF Serv. Pharma who is supplying a new neb with each order. I am keeping the nebs so next order I will have 3 and plan to clean them all at once at the end of the day so I have 3 clean for the following day (1 for each treatment).

Yes, open label extensions are only for people that participated in the Ph.3 trial usually. Perhaps earlier phase participants will be offered the right to participate as well but the general cf population will not I don't think. Also, I have heard about an underground movement by adult cfers that are 50% FEV1 or lower to have Vertex offer a compassionate use study.

 

[LouLou]

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

I have a few questions for the posters on this thread. I am on Day 3 of Cayston.

So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.

LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src=""></end quote>

I believe it is recommended to sterilize after each use. DO NOT USE A WET NEB THOUGH! I have the germ guardian to help dry my parts if I am in a hurry. I do not use it to sterilize though as mom2lillian tested it and found it didn't do a good job. I have 2 nebulizers. I use the same one for AM & mid day without cleaning it and then I use the 2nd sterile neb for my PM treatment. I am getting it through CF Serv. Pharma who is supplying a new neb with each order. I am keeping the nebs so next order I will have 3 and plan to clean them all at once at the end of the day so I have 3 clean for the following day (1 for each treatment).

Yes, open label extensions are only for people that participated in the Ph.3 trial usually. Perhaps earlier phase participants will be offered the right to participate as well but the general cf population will not I don't think. Also, I have heard about an underground movement by adult cfers that are 50% FEV1 or lower to have Vertex offer a compassionate use study.

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i>
<br />
<br />I have a few questions for the posters on this thread. I am on Day 3 of Cayston.
<br />
<br />So far I have been washing and sterilizing all of the neb equipment after each use. It is necessary to sterilize 3 times per day or is once a day the recommended approach? I can't recall if they said you had to sterilize each time or just one time per day.
<br />
<br />LouLou- so excited for you to get 770! Remind me- is the Open label extension for those who participated in the trials? And what mutations do you have? I am pregnant with my second and due in Dec.... I am hoping that I have it timed just right so that after I finish breastfeeding (hopefully for 12 months) I can start on 770!!! Assuming it gets to the market quickly<img src=""></end quote>
<br />
<br />I believe it is recommended to sterilize after each use. DO NOT USE A WET NEB THOUGH! I have the germ guardian to help dry my parts if I am in a hurry. I do not use it to sterilize though as mom2lillian tested it and found it didn't do a good job. I have 2 nebulizers. I use the same one for AM & mid day without cleaning it and then I use the 2nd sterile neb for my PM treatment. I am getting it through CF Serv. Pharma who is supplying a new neb with each order. I am keeping the nebs so next order I will have 3 and plan to clean them all at once at the end of the day so I have 3 clean for the following day (1 for each treatment).
<br />
<br />Yes, open label extensions are only for people that participated in the Ph.3 trial usually. Perhaps earlier phase participants will be offered the right to participate as well but the general cf population will not I don't think. Also, I have heard about an underground movement by adult cfers that are 50% FEV1 or lower to have Vertex offer a compassionate use study.

 

[mom2lillian]

yes you have to clean it each time and you are supposed to sterilize it at teh end of the day. I have two so I have been using one in the morning, washing, soaking in alcohol, air drying, then using 2nd one at lunch doing same wash process on that one, then by night time the first one is dry. I have not *ahem* incorporated sterilizing yet<img src="i/expressions/face-icon-small-blush.gif" border="0">.

 

[mom2lillian]

yes you have to clean it each time and you are supposed to sterilize it at teh end of the day. I have two so I have been using one in the morning, washing, soaking in alcohol, air drying, then using 2nd one at lunch doing same wash process on that one, then by night time the first one is dry. I have not *ahem* incorporated sterilizing yet<img src="i/expressions/face-icon-small-blush.gif" border="0">.

 

[mom2lillian]

yes you have to clean it each time and you are supposed to sterilize it at teh end of the day. I have two so I have been using one in the morning, washing, soaking in alcohol, air drying, then using 2nd one at lunch doing same wash process on that one, then by night time the first one is dry. I have not *ahem* incorporated sterilizing yet<img src="i/expressions/face-icon-small-blush.gif" border="0">.

 

[jmiller]

Got it- so I can probably get away with one big sterilization at the end of the day... but what about that metal piece in the middle? I have a replacement neb but I guess you only get one of those. I believe in the video i watched about sterilization it says to rinse that piece off in running water before sterilizing... so is it enough to rinse it between uses and then only sterilize it once per day? Can I dip that in alcohol?

 

[jmiller]

Got it- so I can probably get away with one big sterilization at the end of the day... but what about that metal piece in the middle? I have a replacement neb but I guess you only get one of those. I believe in the video i watched about sterilization it says to rinse that piece off in running water before sterilizing... so is it enough to rinse it between uses and then only sterilize it once per day? Can I dip that in alcohol?

 

[jmiller]

Got it- so I can probably get away with one big sterilization at the end of the day... but what about that metal piece in the middle? I have a replacement neb but I guess you only get one of those. I believe in the video i watched about sterilization it says to rinse that piece off in running water before sterilizing... so is it enough to rinse it between uses and then only sterilize it once per day? Can I dip that in alcohol?

 

[mikefab]

wondering the same thing! the doctor wanted me to start it but insurance wanted me to pay 30% which was $1000 because it was a "new drug"

 

[mikefab]

wondering the same thing! the doctor wanted me to start it but insurance wanted me to pay 30% which was $1000 because it was a "new drug"

 

[mikefab]

wondering the same thing! the doctor wanted me to start it but insurance wanted me to pay 30% which was $1000 because it was a "new drug"

 

[D]

Have you tried the Cayston assist program? Here are a couple numbers you may want to try:

CF patient assist Foundation (cfpaf.org): 1-888-315-4154

Gilliad assist program: 1-877-229-7866

 

[D]

Have you tried the Cayston assist program? Here are a couple numbers you may want to try:

CF patient assist Foundation (cfpaf.org): 1-888-315-4154

Gilliad assist program: 1-877-229-7866

 

[D]

Have you tried the Cayston assist program? Here are a couple numbers you may want to try:
<br />
<br />CF patient assist Foundation (cfpaf.org): 1-888-315-4154
<br />
<br />Gilliad assist program: 1-877-229-7866

 

[mamaScarlett]

as far as drying the neb-i've been following the video instructions that said that after sterilizing, to lay it out on a clean paper towel to air dry, and then seal it.
i'm finding that by the time its time to do my next treatment, the neb is almost dry... but not fully.
so, except for my pm, its never fully dry enough to seal it up after use.
(fyi, i fully sterilize mine after each use)
not to sound nuts here (but i think this neb is making us all sound crazy!)-but am i doing something wrong?? why can't i use the neb if its not fully dried?