Hello :)

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

Thanks

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Hi,

I trialled Xolair last year as my asthma had become really difficult to manage. I was on really high dose steroids and hadn't been able to wean for months and was still being admitted regularly. I was really really unwell and it had become really difficult to function at all. My IgE was about 160 I think and I have a couple of known allergies (mould, grass., pollens etc). It started positively and for a couple of months it looked like it was working but then it seemed to loose all its effectivity and I came off it a few months later (about 11 months total I was on it).

I had two injections once a month and found the whole thing fairly ok. The injections weren't too bad and I just suffered from a dead arm for a few days after. It's hard to know what if any other side effects I had from the Xolair because I was on so much other medication at the time.

I think it's defiantly worth asking about at Papworth. I know how horrible it can be to get to the point younare at now and it's worth IMO trying anything that might work at that stage. It didn't work for me but I heard a few stories about what a HUGE difference it had made to some people's lives.

If you have any more questions let me know!

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Thankyou Im so sorry it didnt work out for you, that must have felt so frustrating. Your feedback is really helpful, I will definitely ask them about it today. I hope you're doing okay at the moment..

Lynda

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Hi,

Just wondering how you got on at Papworth yesterday? Were they open to the idea of trialling Xolair?

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Hi Sarah,

It was a productive, if somewhat depressing appointment. My consultant is fab, and he does really listen to me, the problem is not everything can be fixed

He has done an IgE blood test, and is happy to consider xolair, depending of course on the results of bloods, which is fine as there are NICE guidelines about prescribing.

He went through my lung function tests with me and basically said although I have about 30% lung function left, the problem is that my small airways are only functioning at 11% of predicted. Coupled with my scoliosis and squashed organs that is what is causing me a big problem. He is fairly pessimistic about this improving much if at all.

Anyway, we agreed to try me again on aminophylline/theophylline tablets, and also potentially to double my dose of monteleukast if the amino doesnt work. I get toxicity side effects from amino easily so he wanted to start me on half the normal dose and then do bloods shortly after. I was meant to start on 100mg but papworth's smallest dose was 125mg - I agreed to give it a go, but I've only been able to take it twice, a couple of days apart, and both times I have felt terrible, like someone has taken a meat cleaver to my head and split it in two! Will contact my GP today to see if he can prescribe some 100mg to try.

It seems I need to revise my ideas about getting back to 'normal' and working as a nurse Or at least accept there is gonna be a new normal eh.

Thanks for asking

Lynda