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Good news and bad news

Thought I’d post an update on here as I haven’t for a while and could do with a rant/unload! Sorry that this will be pretty long!!

So I’ve finally had some good news in terms of my asthma - despite being told differently a few months ago it turns out that I do in fact just sneak in to the dosing criteria for xolair so might be able to have a trial of that!

They also think that I might have an immune deficiency that is contributing to my flares - looking back I have always had a lot of sinus/ear infections which is apparently one of the signs, so it seems a reasonable guess! But the issue is the steroids could also be contributing or causing it (I’ve been on high doses constantly since feb and had around a course a month for a year or so before that).

So while I’m pretty happy about getting closer to a full diagnosis and management it’s a little frustrating because immunology want me off the steroids to do their tests (which really isn’t going well!!) and respiratory don’t want to try xolair until immunology are finished with me! Oh the joys!

It’s just really annoying because at the moment I’m so unstable - I’ve had 6 admissions this year, most of which have been about a week long, I think I’ve needed oxygen for quite a while on all of them, I’ve had IV aminophylline for half of them and been on HDU once. Plus now I’m suffering with symptoms of a sinus infection that won’t clear up and while I’m not awfully wheezy I’m pretty short of breath with it and my peak flow is sat at about 210 (on a normal of 440) - so off to the GP tomorrow and hopefully some antibiotics!

Hope everyone else is well! 😁

2 Replies

I can understand your frustration, as things take so long. However, I just think of how things were when I was a child and very seriously ill with asthma attacks. I know the old attitude of 'it was a lot worse in my day' is no help at all, really, but you do have the hope, based on evidence, not just desperation, that you are going to get better. The only thing you can do is just run with it, accept that people are working as well as they can to help you get better, and it will all be ok in the end, because it will. You might find MIndfulness will help you get through this - you might try it. If nothing else, it should help you to relax a bit. All good wishes to you.

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Thank you for your kind words! The one thing that everyone says to me (now they’ve decided that I do have severe asthma!) is that they think I cope with it very well from a mental point of view, so at least I have that as a positive too!

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