Monday, 26 November 2012

New Nebbie!

Yay, I've finally got my new nebuliser! I went last Wednesday for the trial dose of Azteronam (also known as Cayston) to make sure I was okay to have's usually used when you can't have Tobi/Bramitob or Colomycin like in my case.
I quickly go it all set up with the physio, puffed away and boom, no reaction and off I went.

It's difficult having to do it three times a day as I end up doing it around 7.30 before work, 3.30 the minute I come out of work and then around 10ish too. The good thing is it's a month on then a month off :) so that's means I do get a break from it! It's the last anti-pseudomonal thing I can use before IVs as nothing else works. Other CFers I've spoken to said it's brilliant so fingers crossed it does some good!

Other than that I've been feeling pretty good lately which is nice. Still getting the odd chest pain here and keeps swapping from one lung to the other but it's only for like 10mins here and there so I'll just keep an eye on seems to be getting less frequent so maybe the neb is just moving a few plugs!

I went and saw James Bond: Skyfall the other night which was AMAZING! One of the best films I've seen in a very long time. And it's bought back my childhood desire to be a spy..but seeing as I can't even do a forward roly-poly it doesn't look like a promising career ;)
Mmm mulled wine & roasted

Anyway, my next appointment is on 18th December (yay for monthlies!) so hopefully I'll manage fine until then and the neb will have done some good..if it's not made a difference or I've got worse they'll just take me off it as it's so expensive it's not worth keeping me on it if it's not doing anything!


  1. I love Cayston! I didn't see a huge difference in my lung function (if any), but it has given me stability that I never had before. It has made a huge impact in that I rarely need oral meds and have gone 3 years without IVs. I used to use orals every 3 months and IVs every year. I hope it works just as well for you!

    1. Ah wow! The doctors are hoping it'll reduce the amount of flare ups I get with my pseudo so hopefully that will mean less IVs.. I've had so many of the past year, it'll be nice not to have them too much!

  2. I used to have IVs every month-ish, but since being on it, I'm so much more stable! :D good luck with it x

    1. That's brilliant! A lot of people I've spoken to have said they need IVs a lot less.. last year I was on them pretty much 9-10/12 months of the year, having a few weeks break here and there. My last lot of IVs were end of August and now I've started this I'm hoping I wont need any for a while! Seem to be finally having a good spell (on the whole) which is much needed! Stay well :) x