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Matt31
Guest
Im going to start on the cayston and was wondering how well it works for you guys???
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Im going to start on the cayston and was wondering how well it works for you guys???
I've noticed a big difference since I started Cayston, although I'm taking double the dose (6 vials a day) because I wasn't getting any effect at the lower dose (3 vials a day).
My lung function has stabilised and inflammation and tightness have reduced.
I've literally gone from puffing hard after climbing the stairs to not really noticing.
And its very quick to do with the supplied nebuliser. About 2 or 3 minutes.
I breath in as deeply as possible and exhale through my nose.
I'm hoping to clear some gunk out of my sinus doing it this way.
TreasureGoddess
Member
My son has only been on cayston for a month. We are using it every other month (alternating wtih Gentamycin) for treating mrsa. He has the side effect that it often makes him cough until he about throws up. It's not a deep chest cough, but an immediate gag reflex type cough. After searching on these boards, it seems that's common. A helpful tip is to have a sip of water immediately before starting the treatment and possibly pausing it mid-way through to have another sip. He does seem to feel better during the days with the Cayston and asks for his treatments each time, so they must be helping overall even with the rough inhalation. It is a super speedy dose, so he's usually done 2.5 to 3 mins.
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Mrkdale
Guest
I am a middle aged adult male and used cayston for the first time 2 months ago. It worked wonderfully for me! Side effects are minimal. Using the specialized neb that comes with it is also a welcome change. 2 minutes vs 12 for a dose is great! Only side effects have been a funny taste in my mouth after a couple of days but it was minor. I think the coughing mentioned by others might have more to do with the super fine particles made by the neb getting much deeper in the lungs than the medication itself. just a guess. I am VERY happy with Cayston!!
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Matt31
Guest
Is it real expensive like the tobi???
Would you mind explaining what SoB is? Thanks. Cayston is very expensive if you don't have good insurance. I paid $25 copay when I had private insurance with Kaiser So Cal. Now that I'm on Kaiser's Medicare Advantage it costs around $1200 and since I went into the doughnut hole, they now want $2000. Can't afford that. So, doing inhaled Colistin, which is considered an IV drug and therefore, free...so far...Lol. Actually, if I thought Cayston was worth $2000 a month, I might give it a go 30 on and 30 off, like I'm doing with the Colistin. None of the inhaled antibiotics do much for me anymore. Maybe 20% less coughing and junk production. Sure not worth the ridiculously high cost now.Works pretty well. I have a little more SoB on it than off it, though. Not bad, just enough to notice. By the end of the month I usually notice a real difference in the amount and color of stuff I cough up, and the first couple weeks off of it are fantastic.
Would you mind explaining what SoB is?
SoB, shortness of breath. Basically, I notice myself getting winded a little easier after doing stupid things like taking a shower or taking the garbage out. It should probably be noted that I'm at a fairly low lung function; around 25%. It's a minor annoyance that's far outweighed by what the drug does over the course of a month for me, in my opinion.
By the second day I notice my mucus coming up easier and my sinuses draining. My only problem is that two days after I'm done the mucus is back and the sinuses fill back up. My dr and I are trying 2 weeks on, 2 weeks off, which helps me from declining as much between doses.
TICMOMOFF1
New member
My 10 year old has been taking it for a year and a half....she has been getting worse on it...also the machine gives out within that time frame and no insurance will pay for another one...they do have a 2 year warrenty on them but I wouldnt be buying one if this one breaks...they cost $895 and last what really 8 months since its every other month.
Richard Gamba
New member
Hi Matt, did you finally start Cayston ?
how do you feel then ?
how do you feel then ?
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Matt31
Guest
im back at the hospital again. He doesn't know now if he want me to start it???? So wait an c . I, growing the phedonmorsus heavy.Hi Matt, did you finally start Cayston ?
how do you feel then ?
running4life
New member
It's a pain doing it 3x a day to be honest, but it's okay. Guess it works okay. Treatments are so quick. Takes longer to clean the handset than do the treatment.
I still have PA but lung function is high. I actually do my Cayston as before I never did Tobi because it took too long to do. So yeah, Cayston is good.
I still have PA but lung function is high. I actually do my Cayston as before I never did Tobi because it took too long to do. So yeah, Cayston is good.
running4life
New member
Yes, Cayston is about $5700, thank God my copay is $20.
Richard Gamba
New member
It's a pain doing it 3x a day to be honest, but it's okay. Guess it works okay. Treatments are so quick. Takes longer to clean the handset than do the treatment.
I still have PA but lung function is high. I actually do my Cayston as before I never did Tobi because it took too long to do. So yeah, Cayston is good.
When did you start it ? I would say Cayston has a long term effect ?
Richard Gamba
New member
that's th same for me I don't know what to do (NOSEPICK)