Not again!!

[Js706]

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!

[emmasue]

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

[Js706 in reply to emmasue]

Oh no! 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

[emmasue in reply to Js706]

Thanks. Hope you get sorted soon. x

[EmmaF91 Community Ambassador]

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!!!

Emma x

[Js706 in reply to EmmaF91]

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!

[EmmaF91 Community Ambassador in reply to Js706]

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

[Js706]

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!

[EmmaF91 Community Ambassador in reply to Js706]

Glad to here that you’re heading the right way to be heading home!

Sorry to hear that you’re not eligible for the biologicals and are still on the hunt for drugs that could help you out 😔

Hope you get out and get answers soon! Look after yourself when you are released xxx