Cayston users

[bethylove]

1. Yes
2. Yes
3. Yes. The first month I had ever done Cayston my PFT's jumped up quite a few points and I was able to keep them there. The first hospital stay after starting my cayston in the rotation, I was able to get back into the 70's after being in the 60's for a couple of years. I always tell my doctors this: I feel better on tobi than nothing, I feel better on colistin than tobi, and I feel the best on cayston.

I find that after 3 days or so my 'cayston cough' that dry tight-ish cough goes away and then I hardly cough. whereas on tobi I cough regardless. Remembering that mid day dose can be a pain, but I can usually make it before 6 so that my last dose is around 10 or so.

 

[bethylove]

1. Yes
2. Yes
3. Yes. The first month I had ever done Cayston my PFT's jumped up quite a few points and I was able to keep them there. The first hospital stay after starting my cayston in the rotation, I was able to get back into the 70's after being in the 60's for a couple of years. I always tell my doctors this: I feel better on tobi than nothing, I feel better on colistin than tobi, and I feel the best on cayston.

I find that after 3 days or so my 'cayston cough' that dry tight-ish cough goes away and then I hardly cough. whereas on tobi I cough regardless. Remembering that mid day dose can be a pain, but I can usually make it before 6 so that my last dose is around 10 or so.

 

[jamoncita]

i personally (on doctor's orders) use cayston two weeks on, two weeks off because at the end of my month off the cayston i always began to feel noticeably crummy (lots more phlegm and coughing and shortness of breath).
i no longer take tobi.
i find that cayston cleared me up miraculously the first month of use, but has since not had quite as powerful an effect. though i will say i find that it does a good job of clearing me up so that i feel it's easier to breath and feel better generally because of that. sometimes the cayston makes me cough, but not as much as the tobi did when i used to take it. after the first week i begin to feel better in terms of general symptoms - less phlegm, less coughing.

 

[jamoncita]

i personally (on doctor's orders) use cayston two weeks on, two weeks off because at the end of my month off the cayston i always began to feel noticeably crummy (lots more phlegm and coughing and shortness of breath).
i no longer take tobi.
i find that cayston cleared me up miraculously the first month of use, but has since not had quite as powerful an effect. though i will say i find that it does a good job of clearing me up so that i feel it's easier to breath and feel better generally because of that. sometimes the cayston makes me cough, but not as much as the tobi did when i used to take it. after the first week i begin to feel better in terms of general symptoms - less phlegm, less coughing.

 

[hammerpocket]

1. Yes
2. Originally I took TOBI on the alternate months, but no longer (see below).
3. Cayston has definitely helped me. I used to have very erratic PFTs, up and down in a way my doctor said was unusual. Eventually it became obvious that when I would end a round of Cayston and switch to TOBI, my lungs would tighten up and make me feel pretty bad within 2-3 days. I stopped TOBI and immediately saw my PFTs reach a higher level and stabilize. I now alternate Cayston with nothing. (I'm hoping I when the powder form of TOBI is available it will work for me.) I have also noticed a great reduction in mucus production when I'm on Cayston, perhaps because it is reducing inflammation.

 

[hammerpocket]

1. Yes
2. Originally I took TOBI on the alternate months, but no longer (see below).
3. Cayston has definitely helped me. I used to have very erratic PFTs, up and down in a way my doctor said was unusual. Eventually it became obvious that when I would end a round of Cayston and switch to TOBI, my lungs would tighten up and make me feel pretty bad within 2-3 days. I stopped TOBI and immediately saw my PFTs reach a higher level and stabilize. I now alternate Cayston with nothing. (I'm hoping I when the powder form of TOBI is available it will work for me.) I have also noticed a great reduction in mucus production when I'm on Cayston, perhaps because it is reducing inflammation.