What's your experience with Cayston?
- Thread starter nocode
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K
kgfrompa
Guest
Cayston
I love Cayston when I am on Cayston I am never sick but when I go off I get so sick I usually end up on IV My problem is I have had allergy to Tobi and two other inhaled meds which is the reason I cannot stay on Cayson every month.
I love Cayston when I am on Cayston I am never sick but when I go off I get so sick I usually end up on IV My problem is I have had allergy to Tobi and two other inhaled meds which is the reason I cannot stay on Cayson every month.
K
kgfrompa
Guest
My Cough is gone while on Cayston To!
I absolutely love cayston. I can't take Tobi ,colistin or pulmozyme. I haven't been in the hospital for two years and the only thing I have done different is starting cayston around that time. Before cayston it was one to times yearly. Now I have had to be on oral antibiotics some but not iv. I am thrilled with the results. Good luck to you.
running4life
New member
I do fine on Cayston. It's a pain doing 3 treatments a day, mainly because I forget. It's great because they only last 2-3 minutes.
I love it. I've been on for about 2 years I think, and when I first started it consistently brought my FEV1 back up 10% or so. I think I was inthe low 80s, dipping into high 70s when I first got on, numbers would fluctuate, and now I'm hanging out in the high 80s low 90s. My "on" months feel much more productive and generally better.
Yeah, it's 3x a day, but it literally takes 3 minutes tops and the compressor is SUPER portable.
Yeah, it's 3x a day, but it literally takes 3 minutes tops and the compressor is SUPER portable.
If you don't mind, may I ask you a question? Are you starting Cayston to improve your FEV1 or because of infections/cultures? The reason I wonder is my sons FEV1's have been dropping over the last year. We do treatments faithfully and exercise daily but they continue to drop. He is not culturing anything that would require treatment and luckily hasn't had a lot of issues this past year, just the drop in numbers. Any advice is appreciated. Thank you
Hi jshet, no problem at all! I am starting Cayston in an effort to improve FEV1. I rarely have to be admitted to hospital due to new infections (2x in 29 years), but I'm at 31% FEV1, so my doctor is doing all he can to keep me away from a transplant for as long as possible. I was admitted last year (that was one of the 2x I've been admitted) for an aggressive IV antibiotic treatment, but my FEV1 did not improve. Now we're trying this.
As a side note, I was diagnosed at 15 and am now 29. FEV1 has ALWAYS been between 40% and 30%. But the last few years it's been 35%, 34%, 33%, 32% and the last one 31%. The decline is very slow but gradual.
Good luck to you and your son. I can update this post with my progress after I've been on Cayston for 6 weeks. (I will go in for a lung function test 6 weeks in to see how it's going)
As a side note, I was diagnosed at 15 and am now 29. FEV1 has ALWAYS been between 40% and 30%. But the last few years it's been 35%, 34%, 33%, 32% and the last one 31%. The decline is very slow but gradual.
Good luck to you and your son. I can update this post with my progress after I've been on Cayston for 6 weeks. (I will go in for a lung function test 6 weeks in to see how it's going)
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cfgf28
Guest
The only thing with cayston my fiance has noticed is it really hits you hard at first and makes you cough while trying to inhale it....Just keep trying though as the coughing gets better. It is 3 times a day but is so much more convenient than doing Tobi treatments! He has only been on it for two months so far...and had a bit of a flare up going on during his clinic appointment before starting it so I can't really say if it helped increase his PFT's or not...But I guess we will see more in the long run.
If you don't see an improvement in 6 weeks I would not give up up on cayston yet. In a 6 week time period you would only have had one treatment if you're alternating 28 days on/off. So it could take longer but I can't really remember. I know how frustrating it can be trying a new treatment and just waiting to see if it helps. I hope this helps you!!!