Cayston and Coughing?

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ryry11

New member
Hey everyone,
I started Cayston on Tuesday. I have been on it every other month since August (so this is my third on month) and had been on it for 2-4 week stints before that. I was on TOBI every other month from October 2011-August 2012.
This time, Cayston is making me cough so hard I'm gagging and retching. It starts on the first breath and goes until just after I finish. It's horrible.
I've been having a lot of mucus production since Thanksgiving and got out of the hospital on the day before Thanksgiving. I had gotten 2 weeks of IVs. I culture pseudo and MSSA.
My PFTs are stable, but I am coughing so much still and the mucus goes between very dark green and almost neon green. Sometimes it has brown specks in it (not dried blood, it looks like tiny wood chips). I had clinic on Tuesday and she said I sounded clear.
I do Xopenex (nebulized), HTS 7%, Pulmozyme at night, vest, Acapella, Cayston. Is there anything I can do to make my lungs react less terribly to the Cayston? It leaves me with a crashing oxygen-deprivation headache for 10-15 minutes afterwards and I finish each treatment absolutely exhausted. Help.
Thanks!
Mariah
 
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Printer

Active member
NO!!! Bring up mucus (cleaning your lungs) is great!! Keep up the good work, it will payoff in the long run.

Bill
 
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nmw0615

New member
While I agree with Bill in that coughing is fantastic, I also know what you're talking about with the Cayston Cough. I have the exact same reaction whenever I do my dose of Cayston. I cough so hard, I occasionally throw up, and I'm left with that awful headache that feels as though my brain is trying it force its way out of my skull.

I've found that after a couple of inhalations, if I disconnect the neb from the machine (to turn it off; I want to make sure I get to inhale all the med I can) and take a couple sips of water, I cough a lot less. It extends the treatment time for Cayston, but is rather have it take longer than have the vomiting and headaches. After I take a sip or two of water and a few breaths, I reconnect the neb and start it again.

Hope this helps!
 
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ryry11

New member
Bill- I should have been more clear. They seem to be unrelated; I LOVE coughing up so much gunk (although I have no idea why I'm doing so, I'm usually clear and cough nothing up) but this Cayston cough is not productive and just awful. I don't cough anything up with it, it just makes me gag and retch.
nmw- Exactly. I'll try that for my next dose; I don't feel like I'm actually getting any med because I'm coughing so much. I'll aim it toward my mouth when I'm breathing in while coughing but I feel like whatever I breathe in is immediately coughed back out. You know?
bigstar- If it continues I'll call clinic. I went to clinic on 12/4 and they said I sounded clear, so I don't think I have an infection brewing, but I'll keep an eye on it as usual.
 
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Printer

Active member
Mariah:

I can only speak for myself. I was only able to take Cayston for 10 days before I had to stop. The first treatment and all that followed were very productive as to producing mucus. I REALLY wish that I could have continued.

My tongue felt burnt, like I had eaten pizza cheese right out of the oven. It is almost 2 months and my tongue is still burnt.

I would suggest that you tolerate it as best as you can but stop it if necessary.

Bill
 
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rubyroselee

New member
When I first started Cayston, I coughed so much. It was a really annoying cough, almost dry and hacky. It would keep me up all night even. But since I have been on it over a year now, I am able to tolerate it just fine. I still occasionally have a cough from it, but it's a lot less than it was at the beginning. I hope the same thing happens to you if you stick with it.
 
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