Cayston

[minimedic304]

Ok, so I was prescribed cayston for the first time and I just received everything....this is a pretty complex medication, and between my life and having to take pulmozyme and now being on 2 iv meds 3 times a day....this is way to much...... is this drug even worth it...has anyone here seen any major difference with this drug....and on the flip side and complications from it. I dont have pseudomonas so i dont see having to take this,....i emailed my doc but I dont think I am doing it

 

[minimedic304]

Ok, so I was prescribed cayston for the first time and I just received everything....this is a pretty complex medication, and between my life and having to take pulmozyme and now being on 2 iv meds 3 times a day....this is way to much...... is this drug even worth it...has anyone here seen any major difference with this drug....and on the flip side and complications from it. I dont have pseudomonas so i dont see having to take this,....i emailed my doc but I dont think I am doing it

 

[minimedic304]

Ok, so I was prescribed cayston for the first time and I just received everything....this is a pretty complex medication, and between my life and having to take pulmozyme and now being on 2 iv meds 3 times a day....this is way to much...... is this drug even worth it...has anyone here seen any major difference with this drug....and on the flip side and complications from it. I dont have pseudomonas so i dont see having to take this,....i emailed my doc but I dont think I am doing it

 

[mamaScarlett]

I've heard of a few cfers having major improvement with Cayston. I used it before I got pregnant and will use it again after pregnancy. It really helped me maintain my lung function.

You have alot on your plate cf-wise right now. Maybe you are feeling overwhelmed with what you have. Understandable! But its not a good enough reason to not do Cayston. Think of it this way-using Cayston could prevent you from needing ivs the next time, and in the long run make your life more simple.

The decision is really you and your docs. As far as not having pseudo-this drug is not just for pseudo. You don't have pseudo-but you are on Ivs bc of some bug I'm assuming. So talk about it honestly with your doc before deciding. Hey maybe they will say to hold off on for now, you never know. But keep them in the loop.

The first week of Cayston, I was shocked and annoyed by how much work it was. But honestly, cleaning the neb and all of that got routine and I learned how to do it pretty fast.
Hubby said I looked like a solider reloading a gun with how good I got at taking apart and sterilizing that neb! Bam bam...

 

[mamaScarlett]

I've heard of a few cfers having major improvement with Cayston. I used it before I got pregnant and will use it again after pregnancy. It really helped me maintain my lung function.

You have alot on your plate cf-wise right now. Maybe you are feeling overwhelmed with what you have. Understandable! But its not a good enough reason to not do Cayston. Think of it this way-using Cayston could prevent you from needing ivs the next time, and in the long run make your life more simple.

The decision is really you and your docs. As far as not having pseudo-this drug is not just for pseudo. You don't have pseudo-but you are on Ivs bc of some bug I'm assuming. So talk about it honestly with your doc before deciding. Hey maybe they will say to hold off on for now, you never know. But keep them in the loop.

The first week of Cayston, I was shocked and annoyed by how much work it was. But honestly, cleaning the neb and all of that got routine and I learned how to do it pretty fast.
Hubby said I looked like a solider reloading a gun with how good I got at taking apart and sterilizing that neb! Bam bam...

 

[mamaScarlett]

I've heard of a few cfers having major improvement with Cayston. I used it before I got pregnant and will use it again after pregnancy. It really helped me maintain my lung function.
<br />
<br />You have alot on your plate cf-wise right now. Maybe you are feeling overwhelmed with what you have. Understandable! But its not a good enough reason to not do Cayston. Think of it this way-using Cayston could prevent you from needing ivs the next time, and in the long run make your life more simple.
<br />
<br />The decision is really you and your docs. As far as not having pseudo-this drug is not just for pseudo. You don't have pseudo-but you are on Ivs bc of some bug I'm assuming. So talk about it honestly with your doc before deciding. Hey maybe they will say to hold off on for now, you never know. But keep them in the loop.
<br />
<br />The first week of Cayston, I was shocked and annoyed by how much work it was. But honestly, cleaning the neb and all of that got routine and I learned how to do it pretty fast.
<br />Hubby said I looked like a solider reloading a gun with how good I got at taking apart and sterilizing that neb! Bam bam...

 

[AimeeSue82]

All the cleaning and sterelizing sucks, and I'm horrible about doing it after EVERY treatment. But for the last 4 years I've been in the hospital every 3 months, like clockwork. I started Cayston (every other month) in June after I got out of the hospital, and I still haven't been back in yet. For anyone who doesn't want to do the math, that's 5 months now. This is the longest I've been hospital free in years! The first time I've been to a routine clinic apt 3 months post hospitalization- where my PFT's were BETTER than when I left the hospital, btw. Everything else I do is the exact same: Albuterol, Pulmozyme, TOBI every other month, HTS, Zithromax, AquaDEKs, Musinex, Omeperazole, Zenpep, occasional sinus rinses and Fluticasone. What else can I contribute my improvement to? I say try the Cayston for a couple months, if you don't feel a difference, you haven't lost anything. But if it helps, aren't you glad you gave it a shot?

~Aimee, 28 CF w/ PA & MRSA

 

[AimeeSue82]

All the cleaning and sterelizing sucks, and I'm horrible about doing it after EVERY treatment. But for the last 4 years I've been in the hospital every 3 months, like clockwork. I started Cayston (every other month) in June after I got out of the hospital, and I still haven't been back in yet. For anyone who doesn't want to do the math, that's 5 months now. This is the longest I've been hospital free in years! The first time I've been to a routine clinic apt 3 months post hospitalization- where my PFT's were BETTER than when I left the hospital, btw. Everything else I do is the exact same: Albuterol, Pulmozyme, TOBI every other month, HTS, Zithromax, AquaDEKs, Musinex, Omeperazole, Zenpep, occasional sinus rinses and Fluticasone. What else can I contribute my improvement to? I say try the Cayston for a couple months, if you don't feel a difference, you haven't lost anything. But if it helps, aren't you glad you gave it a shot?

~Aimee, 28 CF w/ PA & MRSA

 

[AimeeSue82]

All the cleaning and sterelizing sucks, and I'm horrible about doing it after EVERY treatment. But for the last 4 years I've been in the hospital every 3 months, like clockwork. I started Cayston (every other month) in June after I got out of the hospital, and I still haven't been back in yet. For anyone who doesn't want to do the math, that's 5 months now. This is the longest I've been hospital free in years! The first time I've been to a routine clinic apt 3 months post hospitalization- where my PFT's were BETTER than when I left the hospital, btw. Everything else I do is the exact same: Albuterol, Pulmozyme, TOBI every other month, HTS, Zithromax, AquaDEKs, Musinex, Omeperazole, Zenpep, occasional sinus rinses and Fluticasone. What else can I contribute my improvement to? I say try the Cayston for a couple months, if you don't feel a difference, you haven't lost anything. But if it helps, aren't you glad you gave it a shot?
<br />
<br />~Aimee, 28 CF w/ PA & MRSA