xolair should be widely available to anyone who is eligable for it !!!!

For many years now asthma has controlled my life instead of me controlling it. My life was undersiege from wheezing, inhalers and steriods. My asthma was uncontrolable I attended a problem asthma clinic which became my second home. I was constanly in and out of hospital and struggling to keep up with school work. I felt that nothing would work for me but then i was told about a clinical trial involving a new drug called xolair (omalizumab). I jumped at the chance. The results were amazing I can live my life now i am now completely off prednisolone and have never had to use my salbutamol inhalers. This new drug is truly amaxing from those who suffer from allergic asthma. The only thing is due to the cost of this medication many people are being denied this life saving treatment which has to change!!!!

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  • Cost in the UK

    Are you still in the clinical trial? Are you/will you be continuing to take Xolair? What dose are you on? What is the cost, if you are not on the trial?

    I may be put on it (highest dosage) but have not been told the costs - only that it is extrememly expensive!

  • Is this only used for people who have allergy induced asthma?

  • Yes julie am afraid so

  • Yes julie am afraid so

  • Hi everyone,

    It's interesting to hear from people who have had a real benefit from Xolair.

    NICE have just released draft recommendations on the use of Xolair in severe asthma. (NICE are the National Institute for Health and Clinical Excellence (previously the National Institute for Clinical Evidence) - an independent body which provides national guidance on health and treatment of disease)

    NICE have recommended that Xolair should be available to the minority of asthma patients who have 'clinical confirmation of IgE mediated asthma' (the studies done by the drug company required patients to have a positive skin prick test to at least one perennial air-borne allergen and an IgE between 30 - 700 UI/ml), severe asthma defined by at least two hospital admissions in one year, and a full trial and documented compliance with all treatments upto and including Step 5 of the BTS Guidelines.

    You can see a copy of the Appraisal Consultation Document (the draft recommendations) here: guidance.nice.org.uk/page.a...

    There is a facility on this site for anyone to make comments on the document if they wish to do so.

    Just because NICE has recommended it doesn't mean, unfortunately, that PCTs have to fund it... but it does give us a more powerful weapon to try to persuade them, if we do meet the criteria. Until now, different PCTs have been using different criteria to decide who gets it and who doesn't - and, as NICE have not mentioned a specific IgE range in their criteria, it's likely that different PCTs will continue to use different criteria to define 'IgE mediated asthma'. My own PCT, until recently, were, I believe, allowing it routinely for patients with IgEs between 70 - 700 IU/ml (normal range is lab dependent but is normally roughly <200 IU/ml) who had had Intensive Care admissions, and anyone who didn't meet these criteria had to apply for funding on a case-by-case basis.

    The dose you get is dependent on your initial IgE level and your body weight - the trials used a dose of 0.016mg per kg per IU/ml of IgE. If this value was more than 300mg patients were excluded from the study, so Xolair has not been tested on patients who have very high IgEs.

    You can see the manufacturer's prescribing recommendations and other information at xolair.com

    As for cost, the BNF price listed is £256.15 per 150mg vial, so for patients receiving the maximum dose of 300mg fortnightly it will cost roughly £1000 per month. Sounds like a lot until you consider that the cost to the NHS of one day in ICU is £1000 - £1800!

    Xolair is exciting, but we have to bear in mind that it will only be effective in some cases of allergic asthma, as there are many other mediators involved in the allergic response other than just IgE; also the patients who are potentially the most allergic, with sky-high IgEs, will not be able to have Xolair in sufficient doses because doses that high have not been trialled and could be potentially unsafe.

    Your IgE level is certainly not the whole story as far as your 'allergicness' is concerned - I have a friend who has brittle asthma whose IgE is 0.2 IU/ml (!) and yet she has anaphylaxis to milk and is so allergic to it that her skin blisters if she comes into contact with it (she applied for special funding for Xolair despite her low IgE and got it - she has had some improvement); I know of other people with IgEs in the thousands who are not particularly allergic. My IgE was 36 IU/ml when it was last checked, but I have numerous moderately severe allergies to airborne allergens, and develop a generalised allergic reaction to goodness-knows-what if I don't take antihistamines and steroids regularly. There is some suggestion that your blood IgE levels may not be an accurate representation of your lung/tissue IgE levels; also that some lab tests measure 'free' IgE only, so if you are allergic to something that you are constantly being exposed to, much of the IgE will be bound to the allergen in your bloodstream and will not be measured.

    Tis all a mystery!

    Anyway, hope this helps a bit

    Take care all

    Em H

  • Bumping to the top....

  • Bump!

    Help, please.

  • i agree that if it can haelp those whose asthma is allergy related, by all means it should be as widely available as salbutamol

  • Its nice to hear someone has benefitted from xolair. My consultant is trying to get funding to give it me 'off licence' as I don't meet the manufacturers criteria. My last IGE level was 900 and my BMI is 40... largely due to 60mg pred maintainance dose!

    It's a vicious circle.

    The cost seems high but as Em said compaired to ITU admissions every 1-2 months it's a cheap alternative, unfortunately the money holders in the PCT don't see it like that.

    Truly x

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