Cayston

[cfgf28]

My bf is going to be stopping Tobi and starting Cayston, as long as his insurance okays it...How have other poeple liked Cayston? He has never had it before, and so far it sounds like a much faster to take medicine. How do you clean the cups from it? I'm the one that does all the cleaning, so that won't add to his time...

 

[chris27rocker]

Super easy cleanup! It comes with a baby bottle sterilizer, so just buy some distilled water and you're good to go. You have to wash them immediately, because the filter can get clogged easily. The sterilizing only takes 8 minutes. So much simpler than Pari nebs!

 

[crazygrl1747]

Hello i absolutely looove cayston! It def has been doing alot of good for me! I rinse my pieces off then wash with warm soapy water then i place on the steralizer that you can get with cayston its called a Nuk! I use that to steralize my pieces! Then take off an air dry on a towel what bugs does your bf grow?..i ised to do tobi on my off months from cayston but couldnt tolerate it anymore..and now they want to try me on colistin for the off months..im netvous though lol

 

[cfgf28]

He has sensitive staph, and had cultured PA years ago, but hasn't in a long time. But he has been on Tobi for years, not super compliant with it, so I think his docs figured Cayston would be easier, i don't boil his nebs very often, but I soak them as soon as he is done...I didn't know it came w a sterilizer, I wonder if it will depending what pharmacy it comes from, some of his meds come from caremark, some come from cff pharm... I heard it helps w lung functions, his PFTs have been holding steady at 98 for the last year (since being hospitalized last fall they were at 107 on all the crazy antibiotics in the hospital), I think he has lucked out with less lung complications, mostly digestive issues...Seems like everybody else in the house goes through colds and bronchitis and they never even touch him...

 

[SaraNoH]

As far as I'm aware Cayston only comes from the CF pharm so it will also come with the sterilizer. Honestly, I rarely use the Nuk, maybe once 2 or 3 times during my Cayston months. I just rinse everything off and air dry. As far as the med itself, it's amazing. It consistently bumps my PFTs about 10% without me doing anything extra at all. Plus, since you have to take it 3x a day it helps me stay consistent with my other meds too which is always a plus.

 

[kgfrompa]

I love cayston my body does not know this new drug and it makes me feel great when i go off cayston my body knows and is use to tobi and i seem to be a lot sicker on the off months of tobi.i feel so blessed to have a drug which works so well.

 

[cfgf28]

Do you do the Cayston while using the vest or by itself?, my bf does his other inhaled meds while vesting. But he doesn't do any meds more than one time a day except during Tobi months. He doesn't alternate with anything on Tobi off months. Just does hypertonic and Pulmozyme all the time...You don't wash the cayston neb cups? Just rinse them?

 

[kgfrompa]

I do not Vest with the cayston since it is so quick I do it by It self.

 

[shellbell]

I love how quick and easy the Cayston is compared to Tobi. Do not like the way I feel on Tobi at all. I also had good success with the Colistin. My Dr is just switching it to Cayston to see if that will bring up my PFT's. I could not find a sterlizer anywhere so I am using a pan of water with a steamer basket and stick my nebs in there for 10 minutes. Hope it all works out

Hello and now they want to try me on colistin for the off months..im netvous though lol

 

[SaraNoH]

Do you do the Cayston while using the vest or by itself?, my bf does his other inhaled meds while vesting. But he doesn't do any meds more than one time a day except during Tobi months. He doesn't alternate with anything on Tobi off months. Just does hypertonic and Pulmozyme all the time...You don't wash the cayston neb cups? Just rinse them?

I admit, I'm a "bad" CFer. I think the last time I did the Vest was.... I dunno, a couple of years ago? And yeah, I just rinse everything off. I seemed to have grown up out of the "loop" when it comes to standard protocols (sterilizing, the 3 foot rule etc).

I imagine doing the Vest with Cayston would be a pain since it takes about 3 minutes. That's just enough time to get comfy and settled in the Vest....