Cayston Intolerance??

[alegris]

My general question is if anyone has experienced Cayston intolerance, but I will give some background first.

I tried TOBI a few years ago and couldn't tolerate it at all. I also have asthma and it caused my chest to tighten up so much I couldn't breathe and had to stop. I finally got drug coverage for Cayston and was so excited because of the mostly positive outcome of patients using this treatment.
So I used Cayston for 11 days with no problem. I was feeling great. It made my lungs very clear and also very dry - I wasn't coughing anything up at all. Then suddenly on day 12 of using Cayston, my lungs tightened up. So badly I went into the hospital. I also had a fever and my blood oxygen was 94% (usually it's 98%). Ventolin wouldn't work at all to open things up. Atrovent worked for a little bit but after maybe an hour, everything would tighten up again. Just to give you an idea - my lungs were so constricted I was gasping for breath just sitting there. I couldn't walk, couldn't do anything, and my muscles were so sore from making myself breathe.

So after all that, the docs told me to take a break, take some antibiotics, recuperate, and try the Cayston again after a few weeks. I did all that, tried it again, and my chest tightened up as bad as before on the first dose. Back in the hospital again. I don't know what they used to open my lungs up this time but I was using ventolin and atrovent at home before the Cayston and it didn't help anything. Now the doctors are saying I obviously shouldn't be using Cayston anymore.

So back to my question, has anyone experienced similar intolerance to Cayston? I was under the impression that Cayston is this miracle drug that does not cause bronchospasms like TOBI does. Now I'm feeling a bit depressed because I'm out of options for treating the PA in my lungs.

 

[RockyLass]

Hi! Cayston is a great drug once you are on it,and this is a shame you are having these stupid reactions. If I were you, maybe you could dilute the drug alot more with sodium chloride with .09% ? It can be extremely 'cloudy' and almost like i'm inhaling fog smoke! I cough bad if I inhaled it too fast and can go into spasm, so i try to take very slow breaths nice and easy, not inhaling like my other stuff. Also, I do a neb of albuterol before every dose so my airways are opened up and don't spaz out.

Also its possible you got an infection that just so happened to be at the same time you were on cayston. This happened to me, fever after 10 days on it and I told my doctor but he said he didn't think it was cayston, and i agree and he was right, it was another bug and got it cleared up and now im been fine on my rounds.

Have you tried the new tobi? the powder one? If all the inhaled nebs fall, perhaps ask the dr if they could just do orals ever 28 days on, or off, like Cipro for your PA.

 

[jaimers]

I had a less severe, but similar, reaction to cayston. It made my lungs tighten up and gave me terrible bronchospasms. I would cough to the point of throwing up with every dose. Needless to say that only lasted about a week. The doc had me try it again a few months later and same issue.
I'm still able to tolerate Tobi but had an issue with the Tobi podhaler causing a similar reaction. thankfully no throwing up with the podhaler but caused my lung function to drop significantly.
There is apparently and new formulation if inhaled tobramycin called Bethkis that I'm about to start. Maybe see what other Tobi options there are for you since Cayston is definitely out.

 

[Angelo]

Cayston knock my fev1 from 24 to 18. I had sever reaction to first dose. was supposed to do 3 a day. called the doc, and they said, keep using it, and it should get better. next day I got 2 doses in. more reaction. 3rd day, got 1 dose in and quit. could not breathe anymore. Had to sleep in a recliner over the weekend to recover but the damage was done and my fev1 was 18. Cayston almost killed me, and my docs refused to document it. I think they get paid to prescribe it. If I did not get the stem cells after that, I would have been dead in July of 2011. And Cayston was the last nail driven into the coffin. But thank God for my stem cell doc.

 

[bookworm]

alegris,

Thank you for posting your very clear description of intolerance to Cayston. I experienced the same over three trials too. Still, you may be able to improve your immunity through finding appropriate health supplements for you, examining your diet in relation to your symptoms, and improving your overall health through exercise and stress management.

Some days I think I'm more ahead doing the things I can to induce a sense of well being rather than worrying about how to kill the critters. (As for the other days, it's usually I've forgotten to take care of myself as much as I need to and I need to quickly get in line, instead of getting bent out of shape about it.) Hope you find the way to feel better for you.

 

[Lance2020x]

My doctors put me on Cayston (three times a day one month on one month off) and the first few days of starting the monthly treatment I would get INCREDIBLY sick. Same symptoms as the flu for about 2 days. Then it would wear off and everything would be fine until two months later when I started the treatment over again.
My doctors finally took me off of it and I haven't tried since. It was terrible!

 

[RockyLass]

I have been wheezing like HEWW HAW donkey after Cayston! It kicks my PA controlled, but God awful wheezing, I decided to today try to dilute it, will see how that helps.