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

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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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scanboyd

Member
Finished my 1st month of Cayston about 14 days ago. Not as bad from a time consumption stand point that I thought it would be.

As far as the old Altera Nebulizer, I am using it with Tobi.
I am using 1/2 of the vial of Tobi per neb. rx because of the efficiency of the Altera head. I am going by the article, Guidance on the Use of the eFlow Nebulizers (Altera and Trio Dated April 6, 2010).
This takes about5-6 min.to neb. I time each dose of Tobi, it has run about the same time for each dose. I believe the secret is to clean and wash it imed. and steam sterlize it as least once a day to keep the tiny holes open.

By using the Tobi with the Altera, it could save me a lot of time around 137 hrs. per yr. if it continues as is.

As far as the Cayston, my jury is still out but it seems to me I am not as winded since I started the Cayston. Prior to Cayston, my sats droped to 86-87 (post Cayston consistently at 90)when on the treadmill, 15.5min. mile grade of 4.5 for 2 miles (no O2), I always check sat at the end. Also heart rate while on the treadmill is about 125, prior to Cayston it would run up to 135-140. My Fev1 is 28-29.

Good luck to all with the new drug Cayston, hope it helps us!!
 
S

scanboyd

Member
Finished my 1st month of Cayston about 14 days ago. Not as bad from a time consumption stand point that I thought it would be.

As far as the old Altera Nebulizer, I am using it with Tobi.
I am using 1/2 of the vial of Tobi per neb. rx because of the efficiency of the Altera head. I am going by the article, Guidance on the Use of the eFlow Nebulizers (Altera and Trio Dated April 6, 2010).
This takes about5-6 min.to neb. I time each dose of Tobi, it has run about the same time for each dose. I believe the secret is to clean and wash it imed. and steam sterlize it as least once a day to keep the tiny holes open.

By using the Tobi with the Altera, it could save me a lot of time around 137 hrs. per yr. if it continues as is.

As far as the Cayston, my jury is still out but it seems to me I am not as winded since I started the Cayston. Prior to Cayston, my sats droped to 86-87 (post Cayston consistently at 90)when on the treadmill, 15.5min. mile grade of 4.5 for 2 miles (no O2), I always check sat at the end. Also heart rate while on the treadmill is about 125, prior to Cayston it would run up to 135-140. My Fev1 is 28-29.

Good luck to all with the new drug Cayston, hope it helps us!!
 
S

scanboyd

Member
Finished my 1st month of Cayston about 14 days ago. Not as bad from a time consumption stand point that I thought it would be.
<br />
<br />As far as the old Altera Nebulizer, I am using it with Tobi.
<br />I am using 1/2 of the vial of Tobi per neb. rx because of the efficiency of the Altera head. I am going by the article, Guidance on the Use of the eFlow Nebulizers (Altera and Trio Dated April 6, 2010).
<br />This takes about5-6 min.to neb. I time each dose of Tobi, it has run about the same time for each dose. I believe the secret is to clean and wash it imed. and steam sterlize it as least once a day to keep the tiny holes open.
<br />
<br />By using the Tobi with the Altera, it could save me a lot of time around 137 hrs. per yr. if it continues as is.
<br />
<br />As far as the Cayston, my jury is still out but it seems to me I am not as winded since I started the Cayston. Prior to Cayston, my sats droped to 86-87 (post Cayston consistently at 90)when on the treadmill, 15.5min. mile grade of 4.5 for 2 miles (no O2), I always check sat at the end. Also heart rate while on the treadmill is about 125, prior to Cayston it would run up to 135-140. My Fev1 is 28-29.
<br />
<br />Good luck to all with the new drug Cayston, hope it helps us!!
 
S

sunshine39656

Member
I'm supposed to be getting my Cayston any day now to help get rid of some mucous plugs. I'm a little nervous about starting it but hope to see some real progress.

I appreciate your posting about Cayston and all the responses.

Thanks!
 
S

sunshine39656

Member
I'm supposed to be getting my Cayston any day now to help get rid of some mucous plugs. I'm a little nervous about starting it but hope to see some real progress.

I appreciate your posting about Cayston and all the responses.

Thanks!
 
S

sunshine39656

Member
I'm supposed to be getting my Cayston any day now to help get rid of some mucous plugs. I'm a little nervous about starting it but hope to see some real progress.
<br />
<br />I appreciate your posting about Cayston and all the responses.
<br />
<br />Thanks!
 
C

CFkitty

New member
This might be just anecdotal evidence but I finished my second month of Cayston last week. Within a few days, I started getting very drippy, runny clear sinus discharge. It's been four days of nonstop blowing my nose. Today, after coughing out (from the top of my lungs) a lot of clear mucous, I got some globs brownish-beige mucous out, which worries me. Could Cayston have given me the incredible month of good breathing and no infection I had? I had IVs in October, then another course of meds for MRSA, then went on Cayston.

Has anyone felt better ON Cayston (despite the drama of cleaning it) and worse after a few days off?
 
C

CFkitty

New member
This might be just anecdotal evidence but I finished my second month of Cayston last week. Within a few days, I started getting very drippy, runny clear sinus discharge. It's been four days of nonstop blowing my nose. Today, after coughing out (from the top of my lungs) a lot of clear mucous, I got some globs brownish-beige mucous out, which worries me. Could Cayston have given me the incredible month of good breathing and no infection I had? I had IVs in October, then another course of meds for MRSA, then went on Cayston.

Has anyone felt better ON Cayston (despite the drama of cleaning it) and worse after a few days off?
 
C

CFkitty

New member
This might be just anecdotal evidence but I finished my second month of Cayston last week. Within a few days, I started getting very drippy, runny clear sinus discharge. It's been four days of nonstop blowing my nose. Today, after coughing out (from the top of my lungs) a lot of clear mucous, I got some globs brownish-beige mucous out, which worries me. Could Cayston have given me the incredible month of good breathing and no infection I had? I had IVs in October, then another course of meds for MRSA, then went on Cayston.
<br />
<br />Has anyone felt better ON Cayston (despite the drama of cleaning it) and worse after a few days off?
 
F

FitForCF

New member
I've only been on it for about 45 days now. I have a clinic visit this Tues, so I guess I'll find out if there is any improvement.

WINDEX125; as far as it being a lot of stuff to think about, it's really not that bad. I thought I same thing when I first opened it, but once you get into a general routine, it's easy. It only takes a fraction of the time of a regular neb too.

Good luck
 
F

FitForCF

New member
I've only been on it for about 45 days now. I have a clinic visit this Tues, so I guess I'll find out if there is any improvement.

WINDEX125; as far as it being a lot of stuff to think about, it's really not that bad. I thought I same thing when I first opened it, but once you get into a general routine, it's easy. It only takes a fraction of the time of a regular neb too.

Good luck
 
F

FitForCF

New member
I've only been on it for about 45 days now. I have a clinic visit this Tues, so I guess I'll find out if there is any improvement.
<br />
<br />WINDEX125; as far as it being a lot of stuff to think about, it's really not that bad. I thought I same thing when I first opened it, but once you get into a general routine, it's easy. It only takes a fraction of the time of a regular neb too.
<br />
<br />Good luck
 
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