I've spent ages reading the forums - didnt realise they existed until recently! I've been looking for experiences with Xolair, as I have my outpatient appointment at Papworth tomorrow and want to ask them if they will consider it for me.
I have severe asthma, with allergies - which I may cope with if it wasnt complicated by 30% lung function (lung capacity of 1.2litres). I also have a severe scoliosis and have lost five inches of trunk length, so my lungs and internal organs are very squashed. Eating compromises my lung function, and I receive the majority of my calories through 24hr gastrostomy feed. This means the slightest whiff of an exacerbation in my asthma and everything goes belly up!
One of my allergies is grass, which would be the one which has a long season lol. I am now on my 14th week of oral steroids this year, and they are having little effect - not eating, not sleeping, and the walk is more of a funeral shuffle. Worryingly for the first time I had a massive asthma attack whilst several days into high dose oral steroids - oral steroids used to totally sort me out a few years ago. I dont want to spend every year taking loads of oral steroids, as I already have the start of osteoporosis and I am really worried about my spinal fusion deteriorating further, so need to think about alternatives.
Im starting to feel like my lungs are ruling my life. I am a qualified nurse and up until three years ago was working all hours, pretty active (at my own pace) and life was good. Now I cant work, cant plan anything, life is unpredictable, and of course it has a huge impact on my (fabulous) husband which upsets me. Im hating that I am getting frustrated and angry with it all. I take fostair, ciclesonide, salbutamol (inhaler and nebs), tiotropium respimat, singulair, carbocysteine, azithromycin, amoxycilin, omeprazole and domperidone (aspiration pneumonia), and the higher dose fexofenadine. Plus oral steroids, and the gubbins to try and reduce osteoporosis. All that, and Im still in a flipping mess.
My biggest worry about the xolair is anaphylaxis as my lung function is so restricted anyway, the thought terrifies me! Papworth have been fantastic at sorting lots of stuff out and getting me properly diagnosed (old hospital wrongly diagnosed me with bronchiectasis), but the allergy issue is becoming very disabling and I feel like someone has run off with my life.
Any feedback would be really appreciated so I can go confidently armed with info tomorrow