Rant incoming! I thought I was just getting in to a really decent run, and was pretty stable on my reducing course of prednisolone (had got down to 25mg over a few weeks).
Then the wet weather appeared yesterday and I went from totally fine to being on the border of a severe/life threatening attack in an hour!
Cue an afternoon of back to back nebs, magnesium, IV aminophylline and have now ended up on HDU as I couldn’t be monitored safely on the ward I was on! At least it isn’t ITU so I’ve still managed to avoid that.
Just getting a little bored of all this and wish the difficult asthma service would get back to me about whether I qualify for xolair injections!
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Js706
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Sorry to hear this. The weather really hasn't helped. I am in hospital at the moment recovering from flu so I know how annoying it is. Hope you hear back about the injections. Let us know if they work. I have only recently heard about them and wondered if they would help me. Get well soon. x
Sorry to hear you’re so bad at the moment, hopefully this will be a quick flare up, and quick recovery so you won’t have to linger too long in hospital!
I completely understand where you are coming from! My local first mentioned Xolair to me back in May 2016, but I only started on it this January. Those intervening months was one severe/LT attack after the other, almost constant pred, and never feeling normal. I know well the nebs/hydro/mag combo (already on theophylline tablets and my body tends to over/underabsorb aminophylline so they don’t give that to me!) Luckily I managed to avoid ITU/intubation tho I had a few close (and 1 extremely close) calls! If it helps since starting the Xolair I’ve had a few exacerbations, but they’re less frequent and more easily dealt with!
I hope you hear back soon about the trial (it may be worth getting your local to chase it while you’re in) and I hope you’re starting to feel better and that you’ll get you’re freedom soon! 🤞 the weather will sort itself out soon and not cause a reoccurrence on your part! Feel free to rant - I firmly believe that it’s therapuetic!!!
Glad to hear they’re helping you! Although I really hope it doesn’t take that long for me to start them if I meet the criteria - it took 15 admissions for me to get to the difficult asthma service!
Thankfully my local hospital runs the difficult asthma service so I should be able to chase it up while I’m here!
Unfortunately I had to be ‘officially’ diagnosed with asthma initially as I’d never had a LFT desire multiple attacks and a&e trips, plus my old GP ‘downgraded’ my meds despite me getting worse so I then had to wait another 6 months so I could have 6 months on top meds available 😒 (same GP refused to refer me to a hosp specialist despite me glaring up since Sept 15 and I had to play the system and stay overnight to get that!). After that was when they referred me to my tertiary centre (Brompton) which I joined a waiting list for favour a year for my first appt. My protocol fell on the one month a year I’m usually well, so they told me I didn’t have asthma (despite multiple LFT showing it at my local), so had to wait another couple months until I had an appt when they saw me ill , then they took my case to panel🙄🙄😒.
It was a very long, frustrating process so 🤞🏻 if you’re local is a specialist centre you’ll speed through the process a lot quicker than I did! Hope you hear back from them soon xxx
So I’ve made it out of HDU and will hopefully be going home tomorrow to rest!
But unfortunately I don’t meet the criteria for any of the biological therapies at the moment. They’re going to go on a hunt for eosinophils in my blood though (which haven’t ever been raised but they wonder if that’s because I’m always on steroids when they check).
Also turns out I might have an underlying immune deficiency contributing to it all so now I have to go to immunology too to get that looked in to!
So we’re steadily getting more answers but unfortunately not the answers I wanted!
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I hope you also feel better soon. I’m hoping I might manage to chase up a decision on the injections while I’m here
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