Omailzumab

Hi im new to Asthma uk but not new to asthma had it since I was 5. Just wondered if anyone on asthma uk has had injection of omailzumab and if off benefit. Im struugling at moment my ige levels are permantley high but cons are dragging their heels. Feel like dont know where to turn any more feeling very deflated.

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Some centres are starting to use the higher IgE levels from 700-1500 on named patient funding for omailzumab.

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Roxy, I don't have any experience with Xolair (sorry, it's quicker to type this than the drug name!) but I know others on here do. You could try searching for Xolair and/or Omalizumab in the search box on the left. Or you could try ringing the AUK nurses to chat about it - I'm sure they'd know more. I really hope you get somewhere - if you find out more eg from the AUK nurses as suggested or elsewhere it might help to make a list of criteria and how you fit them and why you feel it might benefit you, to discuss with your consultant - they should at least look into it I would think if your levels are high and other things aren't helping.

Sorry for slight tangent but Malawi2, I'm interested to see the actual levels required as my current IgE is 1024 - hadn't realised that mine was within the range specified for this! I'm certainly not going to ask about having it as I think there's a lot of stuff any doctor would - quite rightly - tell me I should try first (like a steroid combo that works...), plus I'm luckily not severe, so I don't think I'd get funding for Xolair even if I did want it. But is slightly startling given that I didn't think I had allergic asthma! And I still haven't got the slightest idea what I might be reacting to, given skin prick tests were negative.

Anyway sorry Roxy and really hope you get some solution whether Xolair or something else!

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Philomenia this is the link for the new xolair IgE values:

ema.europa.eu/docs/en_GB/.....

You can also look at the NICE guidelines for xolair for their use on the NHS.

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Thanks! Just curious really - also, table seems to measure IgE in a different way as value I was told doesn't fit on there (cons letter helpfully doesn't give units)? But measurements you quoted seem to fit with the one I have.

As I suspected I wouldn't meet other criteria (don't do acute exacerbations, skin prick tests were negative, so far haven't had luck with combo inhalers but prob not given them long enough, don't think lung function under 80% though hard to work out given my best appears to be above predicted...but still).

Just intrigued really when you mentioned the values; I'd never thought Xolair was an option given I don't have allergic asthma...I thought (I was right about the Xolair bit anyway). So I just basically have a high IgE level that's all dressed up and nowhere to go!

Sorry for hijacking Roxy - hope link is useful. Btw think this forum does something funny to links - usually adding spaces but I couldn't see one this time, so I just googled the bits of the link plus Xolair - if you want to have a look.

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From what research I have seen, they are currently looking at the use of xolair for non-allergic severe asthmatic patients... I get the feeling that funding the drug will be one of the main issues.

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Omailzumab

Aww thanks to all your replies, I found it very comforting and helpful. Went back to my gp last night and more steroids. Had a very bad night up coughing not much sleep unfortunatly, just wish could get some relief. Im of work yet again hopefully not for too long though really miss living my life to the full. Another day watching daytime telly haha. xx

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My local hospital initially said I could not have xolair because my IgE levels where to high, This was when the IgE levels had to be under 700. Three years later and under a tertiary centre after lots of tests and trying other meds, finally on the drug... From what I understand the consultant needs to have a good idea of your baseline IgE levels, weight, spiromtery results and possible allergens. Getting the detailed info takes time and this may be why it seems like he is dragging his feet... It may also mean getting other meds right to lower your IgE down to a more suitable levels.