Goodbye Xolair!
So its happened, the time has come to say goodbye to xolair! The MDT all agreed that it clearly isn't giving me any benefit anymore in terms of preventing my flares, so we have decided to stop it. Unfortunately I'm already on all the maximum therapy and don't meet the criteria for any other biological treatments so my team have decided to refer me to Birmingham to hopefully undergo bronchial thermoplasty.
Bronchial thermoplasty (BT) is a fairly new procedure (https://www.asthma.org.uk/advice/severe-asthma/treating-severe-asthma/bronchial-thermoplasty/) that involves passing a tube down into the lungs and heating it to essentially burn away some of the thickened muscle. I'm not going to lie, it doesn't sound like a particularly pleasant experience and there are definitely risks associated with it, but surely it has to be better than spending a week of every month in hospital on oxygen and IV medication?!
My centre is restarting their BT service but apparently because of my twitchy airways and immune system issues I'm quite a high risk case - so they wouldn't want to be doing it on me after nearly a year off! This has really made me appreciate the NHS though, in that I'm able to be referred to a much more experienced centre, with no disruption to my normal care, no effort on my part and most importantly, no cost!
In the mean time my local hospital is also hoping to admit me for 2 weeks after Easter to try and reduce my daily steroid dose, and more importantly to see what happens when we try to cut it down. While it'll be a fairly boring 2 weeks, I'm hoping that since a lot of my triggers are airborne allergens at this time of year, being in hospital and away from them will actually let us get the dose down relatively smoothly! Especially because the main issue is the mystery of my immune system - which we can't solve on my current dose of steroids. My current maintenance is "officially" 25mg (not that I've spent much of 2019 there yet!) and I need to be stable on 10mg for the tests... so we've quite a way to go!
Still, here's to things moving forward and actually having a plan!!
Bronchial thermoplasty (BT) is a fairly new procedure (https://www.asthma.org.uk/advice/severe-asthma/treating-severe-asthma/bronchial-thermoplasty/) that involves passing a tube down into the lungs and heating it to essentially burn away some of the thickened muscle. I'm not going to lie, it doesn't sound like a particularly pleasant experience and there are definitely risks associated with it, but surely it has to be better than spending a week of every month in hospital on oxygen and IV medication?!
My centre is restarting their BT service but apparently because of my twitchy airways and immune system issues I'm quite a high risk case - so they wouldn't want to be doing it on me after nearly a year off! This has really made me appreciate the NHS though, in that I'm able to be referred to a much more experienced centre, with no disruption to my normal care, no effort on my part and most importantly, no cost!
In the mean time my local hospital is also hoping to admit me for 2 weeks after Easter to try and reduce my daily steroid dose, and more importantly to see what happens when we try to cut it down. While it'll be a fairly boring 2 weeks, I'm hoping that since a lot of my triggers are airborne allergens at this time of year, being in hospital and away from them will actually let us get the dose down relatively smoothly! Especially because the main issue is the mystery of my immune system - which we can't solve on my current dose of steroids. My current maintenance is "officially" 25mg (not that I've spent much of 2019 there yet!) and I need to be stable on 10mg for the tests... so we've quite a way to go!
Still, here's to things moving forward and actually having a plan!!
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