Xolair assessment and just really had enough!

Following my holiday in HDU last month, the cons has been trying to get me on xolair with a bit more vigour as I've been slowly deteriorating since I gave birth to my daughter in March. I went at the end of June for the spirometry which was at 72 % but my sputum results from my admission showed I was hosting a penicillin resistant infection so they asked me to come back a month later and have them done again, which was yesterday. So off I went to the hospital...again!

I get to the hospital really wheezy and had my spirometry which is now 80.5, rounded up to 81, of course! This would put me out of any consideration fo xolair. I'm due to have my CT scan on friday so the cons has decided to ask me to go back again in 4 weeks for another spirometry as they really think I need it. They have then said that if I don't respond to the xolair, or they can't get me funding I suppose, they will have to send me to Wythenshawe to the difficult asthma clinic as the only other option for my drugs is to add on permenant prednisolone which is not ideal as I get really bad side effects (insomnia, changes to my eyesight leading to bad migranes, weight gain).

I'm not sure about my spirometry as I can produce normal results when really ill. They have always put it down to the fact I play the flute and sing, both of which have taught me excellent breath control. In fact my paediatrician used my flute playing as a form of physio when I had been unwell. Anyone know if they are likely to get funding for xolair in this situation. I'm also dreading a new cons, new clinic, more tests etc etc as I've only just got used to my new cons I met in Feb and he is lovely!

So all in all a really really bad day and that was without the horrible health visitor who made me feel like a bad mother for starting to wean my daughter at 20 weeks old - even though she is completely ready! She even told me that I would make my daughters chance of asthma worse (I didn't bother telling her, she already has it). I'm beginning to feel like my life is falling apart, I've had a few years of really good control and now its back to the uncontrolled asthma dominating life I had before.

6 Replies

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  • I've not heard of suitability for Xolair being based on spirometry. My suitability was assessed by a blood test to show that allergies were an issue in my asthma and on my IgE levels (again from blood test). Have they tested your IgE levels at all?

  • Ratty - in order to qualify for Xolair some PCTs have a set of criteria. So not only do you require the ""right"" IgE levels, you must also have had x number of admissions, below a certain level of lung function and have exhausted all other options. So it's based on lots of different factors rather than just one.

    Drewness - I wouldn't worry too much about the spirometry results. I was put on it based on numerous other criteria, but my lung function on the particular day they did it was still too good. So I guess if the consultants feel you would benefit they can still get it for you.

  • They have regularly monitored my IgE for 8 years now. Every new GP, consultant, admission etc wants to check it! For my PCT, you need spirometry less than 80%, elevated IgE, proven skin pricks with immunology, at least 1 admission and two extended monitoring in A & E within the last twelve months, plus they need to have exhausted all other treatments. I've passed all the checks except the last spirometry and my CT scan. I'm hoping that the recent deterioration might make them willing to apply for funding in this situation, or the clinic at wythenshawe will have different criteria.

  • You sound like you had a horrible day! Hope today is feeling a bit better.

    I hadn't heard about the PCTs using lung function as a criteria for starting on Xolair (got me a bit worried now! as mine is really really variable). They took yet more blood for IgE testing when I was in hospital last week. I think the criteria here in Scotland are a bit more relaxed though. The criteria do sound a bit odd sometimes because my old consultant was worried that because 2 of my previous hospital admissions were so close together that they would count as 1, so you could have 2 hospital admissions including time in ITU but that wouldn't count yet someone with 1 admission and 2 visits to A&E could be eligible.

    I think that if you don't quite fulfill the criteria for Xolair because of just the lung function bit, then your PCT might still fund it. My dad is a GP and a medical advisor for his local PCT and I know that is something he would support! To me it makes sense for them to ley you to at least try it, it might be expensive but if it reduces the time you need to spend in hospital then it might well save the PCT money.

    Take care and feel free to PM if you wish to chat!

    Bryony

  • I know how you feel Drewness my respiratory team kept going on how wonderful the drug was and how it would benefit me. But my ige never went above 20 so after waiting months and numerous blood tests they decided I didn't meet the criteria.this was in 08. Now a new member of staff has decided to repeat the blood testing to see if ige has risen, hoping I now meet the criteria. When u hear the positive results others get u can't help Build up hopes u have the same but same time waiting for the dissapointment of not getting the drug...

  • Hi,

    sounds like you've had a rough time recently, but hang in there. It'll soon be over and with luck you 'll have the xolair to help your asthma, it just seems soooo long winded doesn't it. As regard to the health visitor i can relate to that, mine once told me very sarcastically ""you do know babies do cry"". This was when my daughter cried continuously and wouldnt sleep or take a feed. keep your chin up, best of luck.

    sj x

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