Cayston, total treatment takes a lot of time

[scanboyd]

Cayston nebulizer time is very short with the Altera 2.5 to 3 min. Great!!

However to get to that point you are suppose to use pulmozyme or HTS, to thin and clear out the mucous.
Then do a bonchodilator, Xopenex for me.
After the prep you do the Caystion.
Then comes the clean up at least 12-15 min.

This adds at least 1 hour a day (middle of day) to my neb. time when on Cayston. Thats a additional 168 hours per yr.!!!

This I hope for us CFers Cayston is worth the extra money and time, which most of us do not have a lot of either!!

If we could use the Altera for most meds. this would speed up the process and make it more tolerable as far as time taking Cayston 3 times daily. The Cayston neb.RX has to be at least 4 hrs. apart, or you could coud have toxic levels, if done too close together.


Are we living to take nebulizer treatments or we doing nebulizer treatments to live?? This regards to the time we spend taking nebulizer treatments.

For me I spend 3 1/2-4 1/2(TobI)hours a day doing treatments. Now (we cfers)I am adding at leat 1 hour or more in the middle of the day on my off months from Tobi.

Pari needs to give us a head that will work with the Altera so we can do the Tobi, Cayston and boncholdilator with. This would off set the time for the extra treatment time for Cayston. If the exising head will work but cut some med in 1/2 they need to tell us.
Most CFers are compliant.

If you agree let us be heard!!

Between Cayston and Tobi I (my ins. company is spending $56,000) per yr for these 2 drugs. Thats a lot of money.

I have been only using Cayston for 4 days, expecing great things, If not something visible to me may have to cut it. I will give it a few months.

What has been your experence with Cyaston??

 

[scanboyd]

Cayston nebulizer time is very short with the Altera 2.5 to 3 min. Great!!

However to get to that point you are suppose to use pulmozyme or HTS, to thin and clear out the mucous.
Then do a bonchodilator, Xopenex for me.
After the prep you do the Caystion.
Then comes the clean up at least 12-15 min.

This adds at least 1 hour a day (middle of day) to my neb. time when on Cayston. Thats a additional 168 hours per yr.!!!

This I hope for us CFers Cayston is worth the extra money and time, which most of us do not have a lot of either!!

If we could use the Altera for most meds. this would speed up the process and make it more tolerable as far as time taking Cayston 3 times daily. The Cayston neb.RX has to be at least 4 hrs. apart, or you could coud have toxic levels, if done too close together.


Are we living to take nebulizer treatments or we doing nebulizer treatments to live?? This regards to the time we spend taking nebulizer treatments.

For me I spend 3 1/2-4 1/2(TobI)hours a day doing treatments. Now (we cfers)I am adding at leat 1 hour or more in the middle of the day on my off months from Tobi.

Pari needs to give us a head that will work with the Altera so we can do the Tobi, Cayston and boncholdilator with. This would off set the time for the extra treatment time for Cayston. If the exising head will work but cut some med in 1/2 they need to tell us.
Most CFers are compliant.

If you agree let us be heard!!

Between Cayston and Tobi I (my ins. company is spending $56,000) per yr for these 2 drugs. Thats a lot of money.

I have been only using Cayston for 4 days, expecing great things, If not something visible to me may have to cut it. I will give it a few months.

What has been your experence with Cyaston??

 

[scanboyd]

Cayston nebulizer time is very short with the Altera 2.5 to 3 min. Great!!
<br />
<br />However to get to that point you are suppose to use pulmozyme or HTS, to thin and clear out the mucous.
<br />Then do a bonchodilator, Xopenex for me.
<br />After the prep you do the Caystion.
<br />Then comes the clean up at least 12-15 min.
<br />
<br />This adds at least 1 hour a day (middle of day) to my neb. time when on Cayston. Thats a additional 168 hours per yr.!!!
<br />
<br />This I hope for us CFers Cayston is worth the extra money and time, which most of us do not have a lot of either!!
<br />
<br />If we could use the Altera for most meds. this would speed up the process and make it more tolerable as far as time taking Cayston 3 times daily. The Cayston neb.RX has to be at least 4 hrs. apart, or you could coud have toxic levels, if done too close together.
<br />
<br />
<br />Are we living to take nebulizer treatments or we doing nebulizer treatments to live?? This regards to the time we spend taking nebulizer treatments.
<br />
<br />For me I spend 3 1/2-4 1/2(TobI)hours a day doing treatments. Now (we cfers)I am adding at leat 1 hour or more in the middle of the day on my off months from Tobi.
<br />
<br />Pari needs to give us a head that will work with the Altera so we can do the Tobi, Cayston and boncholdilator with. This would off set the time for the extra treatment time for Cayston. If the exising head will work but cut some med in 1/2 they need to tell us.
<br />Most CFers are compliant.
<br />
<br />If you agree let us be heard!!
<br />
<br />Between Cayston and Tobi I (my ins. company is spending $56,000) per yr for these 2 drugs. Thats a lot of money.
<br />
<br />I have been only using Cayston for 4 days, expecing great things, If not something visible to me may have to cut it. I will give it a few months.
<br />
<br />What has been your experence with Cyaston??

 

[krisgabes]

You may want to speak with your doctor in regard to stopping the TOBI. When I started Cayston the doctor said I could use it as a replacement to the TOBI. It may be something to think about. It certainly cut down my nebulizer time per day.

 

[krisgabes]

You may want to speak with your doctor in regard to stopping the TOBI. When I started Cayston the doctor said I could use it as a replacement to the TOBI. It may be something to think about. It certainly cut down my nebulizer time per day.

 

[krisgabes]

You may want to speak with your doctor in regard to stopping the TOBI. When I started Cayston the doctor said I could use it as a replacement to the TOBI. It may be something to think about. It certainly cut down my nebulizer time per day.

 

[Jeana]

I am curious. Would you be taking HTS/Pulmozyme and Albuterol if not for Cayston? Personally, I would be doing Pulmozyme and Albuterol regardless, just to be able to breathe and feel good, so I don't feel that I am spending extra time on these treatments. If you were not, you must be in very good health. Anyway, as an antibiotic, Cayston is much quicker than other inhaled antibiotics, due to the Altera.

I agree that all of our nebs take a long time, and I look forward to when they decide how much drug to take in an Altera/Eflow in order to get the same results as the longer nebulizers. I do know that the shortened version of Tobi (Tip) is in the drug pipeline and will be looking for FDA approval in the somewhat near future. Hopefully, other drugs will follow.

 

[Jeana]

I am curious. Would you be taking HTS/Pulmozyme and Albuterol if not for Cayston? Personally, I would be doing Pulmozyme and Albuterol regardless, just to be able to breathe and feel good, so I don't feel that I am spending extra time on these treatments. If you were not, you must be in very good health. Anyway, as an antibiotic, Cayston is much quicker than other inhaled antibiotics, due to the Altera.

I agree that all of our nebs take a long time, and I look forward to when they decide how much drug to take in an Altera/Eflow in order to get the same results as the longer nebulizers. I do know that the shortened version of Tobi (Tip) is in the drug pipeline and will be looking for FDA approval in the somewhat near future. Hopefully, other drugs will follow.

 

[Jeana]

I am curious. Would you be taking HTS/Pulmozyme and Albuterol if not for Cayston? Personally, I would be doing Pulmozyme and Albuterol regardless, just to be able to breathe and feel good, so I don't feel that I am spending extra time on these treatments. If you were not, you must be in very good health. Anyway, as an antibiotic, Cayston is much quicker than other inhaled antibiotics, due to the Altera.
<br />
<br />I agree that all of our nebs take a long time, and I look forward to when they decide how much drug to take in an Altera/Eflow in order to get the same results as the longer nebulizers. I do know that the shortened version of Tobi (Tip) is in the drug pipeline and will be looking for FDA approval in the somewhat near future. Hopefully, other drugs will follow.

 

[scanboyd]

Yes I would be taking HTS, Acetylcysteine and Xopenex in the AM and PM 1.5- 2hr(Tobi)each, not during the mid day. I only do 2 treatments day most of the time. It is the mid day treatment that burns up a day taking neb. rx.
We need to be able to speed up the Tobi and Xopenex treatments, like the Cayston with Altera.

The Dr. made the statement that it only takes 3 min. for the Cayston, which is true but he left out the hour prep(Xopenex and HTS or Pulmonase) and clean up time for the mid day treatment.

Taking neb. treatments is one of the most important task a CFer can do. I am a beliver!!

As far as Cayston for me the jury is still out. As stated in previous post I am only in my 5th day now with Cayston.

 

[scanboyd]

Yes I would be taking HTS, Acetylcysteine and Xopenex in the AM and PM 1.5- 2hr(Tobi)each, not during the mid day. I only do 2 treatments day most of the time. It is the mid day treatment that burns up a day taking neb. rx.
We need to be able to speed up the Tobi and Xopenex treatments, like the Cayston with Altera.

The Dr. made the statement that it only takes 3 min. for the Cayston, which is true but he left out the hour prep(Xopenex and HTS or Pulmonase) and clean up time for the mid day treatment.

Taking neb. treatments is one of the most important task a CFer can do. I am a beliver!!

As far as Cayston for me the jury is still out. As stated in previous post I am only in my 5th day now with Cayston.

 

[scanboyd]

Yes I would be taking HTS, Acetylcysteine and Xopenex in the AM and PM 1.5- 2hr(Tobi)each, not during the mid day. I only do 2 treatments day most of the time. It is the mid day treatment that burns up a day taking neb. rx.
<br />We need to be able to speed up the Tobi and Xopenex treatments, like the Cayston with Altera.
<br />
<br />The Dr. made the statement that it only takes 3 min. for the Cayston, which is true but he left out the hour prep(Xopenex and HTS or Pulmonase) and clean up time for the mid day treatment.
<br />
<br />Taking neb. treatments is one of the most important task a CFer can do. I am a beliver!!
<br />
<br />As far as Cayston for me the jury is still out. As stated in previous post I am only in my 5th day now with Cayston.

 

[BaylorCrew07]

I agree with the original poster about the extra prep time and clean up time w/ Cayston. However, my doc told me to just do 2 puffs of xopenex (albuterol) inhaler prior to doing my mid-day Cayston...I don't neb a bronchodialator and pulmozyme prior to doing it - just 2 puffs from my inhaler to open the airways.

The thing I hate about Cayston is that it's 3x/day, which equates to me doing 1 treatment while I'm at work (I work 50+ hours a week, so if I waited until after work I would have to stay up late to get my last one 4 hours afterwards, which I'm not going to do), and it's annoying when people try to come in my office while I'm doing it.

I had some negative side effects on my first month of Cayston, but they have not been as bad my 2nd month...I'm still not 100% on the Cayston bandwagon though.

 

[BaylorCrew07]

I agree with the original poster about the extra prep time and clean up time w/ Cayston. However, my doc told me to just do 2 puffs of xopenex (albuterol) inhaler prior to doing my mid-day Cayston...I don't neb a bronchodialator and pulmozyme prior to doing it - just 2 puffs from my inhaler to open the airways.

The thing I hate about Cayston is that it's 3x/day, which equates to me doing 1 treatment while I'm at work (I work 50+ hours a week, so if I waited until after work I would have to stay up late to get my last one 4 hours afterwards, which I'm not going to do), and it's annoying when people try to come in my office while I'm doing it.

I had some negative side effects on my first month of Cayston, but they have not been as bad my 2nd month...I'm still not 100% on the Cayston bandwagon though.

 

[BaylorCrew07]

I agree with the original poster about the extra prep time and clean up time w/ Cayston. However, my doc told me to just do 2 puffs of xopenex (albuterol) inhaler prior to doing my mid-day Cayston...I don't neb a bronchodialator and pulmozyme prior to doing it - just 2 puffs from my inhaler to open the airways.
<br />
<br />The thing I hate about Cayston is that it's 3x/day, which equates to me doing 1 treatment while I'm at work (I work 50+ hours a week, so if I waited until after work I would have to stay up late to get my last one 4 hours afterwards, which I'm not going to do), and it's annoying when people try to come in my office while I'm doing it.
<br />
<br />I had some negative side effects on my first month of Cayston, but they have not been as bad my 2nd month...I'm still not 100% on the Cayston bandwagon though.

 

[Giggles]

yes it is a pain all these different devices for each med and I do think it all comes down to money. Manufacturers make more money for having all these different things.

Just my opinion, but I only do the Albuterol before the afternoon Cayston. I only do Pulmozyme once a day and do the HTS twice a day. So you may not need the HTS and Pulmozyme in the afternoon too. And if time is REALLY short use a bronchodialater puffer instead of a neb treatment.

Also, Cayston is suppose to be used if you are NOT on TOBI. So maybe clarify with doc why you are doing both. I was using TOBI on my off months of Colistin and now I do Cayston instead of TOBI cause the TOBI was not working too much for me anymore.

On the bright side given the rarity of CF and how little the numbers it affects it is truly AMAZING that we have any drugs for us at all and even more down the pipeline which is due to the CF Foundation being so outstanding. I know it totally sucks and I have had my rants about do I just exist to do nebs... BUT if these nebs are keeping you alive and giving you a chance to have a great life then it is the cross we bear.

Good luck and hang in there!
breathe easy!
Jennifer
38yrs old with CF and CFRD

 

[Giggles]

yes it is a pain all these different devices for each med and I do think it all comes down to money. Manufacturers make more money for having all these different things.

Just my opinion, but I only do the Albuterol before the afternoon Cayston. I only do Pulmozyme once a day and do the HTS twice a day. So you may not need the HTS and Pulmozyme in the afternoon too. And if time is REALLY short use a bronchodialater puffer instead of a neb treatment.

Also, Cayston is suppose to be used if you are NOT on TOBI. So maybe clarify with doc why you are doing both. I was using TOBI on my off months of Colistin and now I do Cayston instead of TOBI cause the TOBI was not working too much for me anymore.

On the bright side given the rarity of CF and how little the numbers it affects it is truly AMAZING that we have any drugs for us at all and even more down the pipeline which is due to the CF Foundation being so outstanding. I know it totally sucks and I have had my rants about do I just exist to do nebs... BUT if these nebs are keeping you alive and giving you a chance to have a great life then it is the cross we bear.

Good luck and hang in there!
breathe easy!
Jennifer
38yrs old with CF and CFRD

 

[Giggles]

yes it is a pain all these different devices for each med and I do think it all comes down to money. Manufacturers make more money for having all these different things.
<br />
<br />Just my opinion, but I only do the Albuterol before the afternoon Cayston. I only do Pulmozyme once a day and do the HTS twice a day. So you may not need the HTS and Pulmozyme in the afternoon too. And if time is REALLY short use a bronchodialater puffer instead of a neb treatment.
<br />
<br />Also, Cayston is suppose to be used if you are NOT on TOBI. So maybe clarify with doc why you are doing both. I was using TOBI on my off months of Colistin and now I do Cayston instead of TOBI cause the TOBI was not working too much for me anymore.
<br />
<br />On the bright side given the rarity of CF and how little the numbers it affects it is truly AMAZING that we have any drugs for us at all and even more down the pipeline which is due to the CF Foundation being so outstanding. I know it totally sucks and I have had my rants about do I just exist to do nebs... BUT if these nebs are keeping you alive and giving you a chance to have a great life then it is the cross we bear.
<br />
<br />Good luck and hang in there!
<br />breathe easy!
<br />Jennifer
<br />38yrs old with CF and CFRD

 

[Futant3]

It has only added about 10-15 minutes to my schedule, because I neb a bronchodilator.

I would would be asking about using the TOBI and Cayston at the same time. The few people I've seen doing both, do them on alternating months so you only have one at a time. I'd even ask if you can cut one altogether, I recently learned that TOBI does nothing for me now so building resistant is a real problem.

For me I don't notice any additional benefits from doing HTS more than twice a day. Barely notice a benefit from doing Pulmozyme more than once a day. Could just be me though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Unfortunately it will probably take some time for the technology to spread. I completely agree that doing all the meds on the Altera would create a "critical mass" of time savings, and make up for the longer cleaning issues. Regulatory red tape, research, and financial incentive probably means it will be a slow process to get there.

Just my 2 cents.

 

[Futant3]

It has only added about 10-15 minutes to my schedule, because I neb a bronchodilator.

I would would be asking about using the TOBI and Cayston at the same time. The few people I've seen doing both, do them on alternating months so you only have one at a time. I'd even ask if you can cut one altogether, I recently learned that TOBI does nothing for me now so building resistant is a real problem.

For me I don't notice any additional benefits from doing HTS more than twice a day. Barely notice a benefit from doing Pulmozyme more than once a day. Could just be me though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Unfortunately it will probably take some time for the technology to spread. I completely agree that doing all the meds on the Altera would create a "critical mass" of time savings, and make up for the longer cleaning issues. Regulatory red tape, research, and financial incentive probably means it will be a slow process to get there.

Just my 2 cents.