After 2 long years of persistence and patience, along with many, many attacks, today I was finally told that I have now been granted approval to start Xolair!
I was super nervous going into my appointment today after “failing” my methacholine challenge test last week. Luckily, I have an asthma specialist that is understanding and also someone who just gets it that all asthma is difficult.
During the challenge test last week, I reacted from the second dose of methacholine, where my chest became tight and my throat itchy. At the final dose, my lung function had only dropped by 16% (not the 20% or greater that is required to “pass”) but interestingly, once the test had ended and as the nurse was prepping a salbutamol nebuliser to reverse any symptoms, my chest became incredibly tight and I couldn’t finish my sentences or catch my breath. Despite this, I had still passed the test but my wonderful asthma specialist took this into account and it was enough for her to override the criteria and grant me the treatment.
For those of you out there with difficult asthma and who aren’t being take seriously, please stay hopeful ❤️ I’ve been knocked back more times than I can count, had my sanity questioned and even mocked by GP’s with no idea but I refused to take no for an answer. I was lucky that I have a great asthma nurse that backed me and once I got passed those barriers and found myself a specialist that really knows her stuff, it’s really proved to be worth while
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MrsCMK
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Am glad that you have had approval it is not easy at all, I’ve been on xolair over 3 years now :). Seems once you get a good specialist the ball seems to start moving, xx
Well done, I’m glad your persistence paid off. I’ve been on Xolair for 18mths, & not had an admittance in a year! First time in about 8/9 years. A complete game changer. Good luck with it, it’s not right for everyone but when it works it seems to be excellent.
Thank you! It’s so lovely to hear of people that are benefiting for Xolair (and other biologicals for that matter). I’m not praying for a miracle quite yet but just hoping for some come of relief really. The perfect scenario would be a pred-free summer...if only! 💭
Xolair has been a game changer for me. It took about six months to kick in which is longer than it seems to be for a lot of people and the change was gradual but man can I feel it when it starts to wear off near the end of the month now. I hope you fare similarly well and find it works for you!
It seems cruel to put us through the methocholine challenge just to diagnose asthma (isn't spirometry + times we've been on prednisone in the past 12 months enough??) My last methocholine challenge was so uncomfortable and took a few hours for my lungs to get back to normal.
Good luck, keep us posted on how the Xolair works for you!
I’m so glad to hear that it’s working for you. It’s stories such as yours that have kept me going. Yesterday, I really thought they were going to suggest me do a repeat of the methacholine challenge test.
Different UHB’s/CCG’s have differing criteria to prescribe biologicals. For me, the criteria was strict, which included being prescribed >5 emergency courses of pred, not responding to preventer inhalers and having severe allergies. The Methacholine Challenge test is a series of breathing tests over the period of about an hour where they make you breath in differing strengths of an irritant which should induce an asthma attack. Not the most pleasant of experiences- you dodged a bullet with that one 😉
How did you get on with Xolair? I hope it’s working well for you!
Oh really? Have you found relief at all from it? Or is it that the relief that you once had has now diminished? I was under a respiratory consultant who I didn’t find particularly useful (despite him being very lovely and willing) but he referred me into my asthma specialist who really understands my condition so I think she’s a bit of a legend 😉
I’m under guys hospital they are amazing first 2 years amazing results hun and then started to drop gradually but doesn’t happen to all but I’ve had a lot of other health issues so it may be that which has caused it to be inaffective. Xx
I am so pleased for you I am waiting to find out if I am eligible for Xolair should know in late February early March 🤞🤞 I just want something to make daily life easier! Xxx
Good morning Mrs CMK I thought I would reply to your shared post, September 2016 I contracted viral pneumonia I've been in hospital 11 times. My condition was diagnosed as severe refractory eosinophilic bronchitis/asthma I've been given mepolizumab/Nucala every 4 weeks I'm having my 21st injection on Thursday I haven't been in hospital for 2years in April all I can say is its marvelous and thank you NHS anyone who may going on these drugs I was very worried but its changed my life I had nearly 2 years of very long nightmare one major health problem leads to many more. I hope this helps all the very best in the future and good luck.
Hey! It’s so lovely to hear when peoples lives have changed from these wonderful biological treatments. So glad you’ve gone almost 2 years without an admission...I wish you many more years the same! Thank you for sharing 🤗
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