Wooooooooooo!

[Js706]

So I had my appointment with the difficult asthma team yesterday and at first it looked like we were going to be stuck without any progress or change to treatment. But then the consultant looked through my discharge letters for the admissions I’ve had since my last appointment and realised that “oh, these are all really severe attacks aren’t they!”.

So I got the phone call this morning to say that the MDT have agreed to give me a trial of xolair to try and reduce my steroid dose (and gain some control!). They’ve managed to sneak me in with the pharmacist to double check everything is ok next Monday and should hopefully be starting within the next few weeks!

I feel like I’m one of the clinics resident awkward patients at the moment though, as the head consultant had requested to see me specifically (so I had a super long wait haha), so hopefully this will help and I can bug them less!

[Lysistrata Administrator Community Ambassador]

Woop! Definitely progress - so glad you've managed to break the deadlock and move forward. Crossing fingers the Xolair helps and you can get back on track with your course etc.

Even if it doesn't, sounds like you have jolted them out of the holding pattern so now they are more aware of the issues. These treatments were after all partly intended to be steroid-sparing, and that was something that NICE considered.

[Js706 in reply to Lysistrata]

Thanks! Yeah it’s a massive relief to at least have something new to try, especially as the weight gain I’ve had (many, many factors, not least of which is the pred!) means I’m only just within dosing so we got there just in time.

At least the consultant said he finally feels like he just about knows what is going on with my asthma now too, so even if it doesn’t help we’ve got a better understanding anyway. Although he says he always dreads having medics as patients because apparently we’re always terrible! 😂

[Asthma-girl]

That’s great news, I hope things improve for you soon