Xolair

Second stay in hospital for asthma attack, first was in December, seen at respiratory clinic in January and told my IgE levels were high, discussed xolair to respiratory liaison nurse in hospital the other day and bloods taken, however dr in hospital said that cause I can take ibuprofen I shouldn't be able to get this med even though levels were high previously, told her I did have some bad allergies to dogs, cats, house dust mites etc, and sprays can trigger coughing and wheezing, she said that cause I had a dog at home my allergy couldn't be that bad, just feel frustrated that information for drug says moderate to severe allergies but doesn't list the types, is anyone out there on it or found any problems getting on it? I have to go back in 2 weeks for results of recent IgE results

Regards Lorraine x

4 Replies

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  • What? That's crazy.

    Xolair is for allergies to perennial allergens. That means allergens that can't be avoided - pollen, dust, mould etc.

    Ibuprofen and dogs are irrelevant as far as I know. I've never even read them mentioned in the many Xolair papers I've been reading up on. (I might get it soon). The link between Ibuprofen and asthma has been massively over stated - only a small percentage of people with allergic asthma have a problem with Ibuprofen, and it's not even consistent - it may be that all painkillers have some non-causal association because funnily enough people take them when in pain, and the source of the pain may be a more relevant factor (but more diverse so harder to data-fy).

    That doctor sounds ill informed at best.

    It is quite hard to get on to Xolair because it costs a fortune. Depending on how big you are it can be many thousands of pounds to treat you. Still cheaper than hospital admissions though.

    However, you'd need to have exhausted all other treatments apart from maintenance steroids first - are you already on Stage 4 treatments?

    hth,

    C

  • Hi thanks for the response, my asthma was well controlled but within last year, i have had so many changes to medications due to unexplained triggers, there has been talks of my work being investigated due to air conditioning unit, but I have been waiting a year and my health is getting the brunt of it. Hopefully things all get sorted as i am getting so frustrated

    Thanks again for advice

    lorraine

  • Second stay in hospital for asthma attack, first was in December, seen at respiratory clinic in January and told my IgE levels were high, discussed xolair to respiratory liaison nurse in hospital the other day and bloods taken, however dr in hospital said that cause I can take ibuprofen I shouldn't be able to get this med even though levels were high previously, told her I did have some bad allergies to dogs, cats, house dust mites etc, and sprays can trigger coughing and wheezing, she said that cause I had a dog at home my allergy couldn't be that bad, just feel frustrated that information for drug says moderate to severe allergies but doesn't list the types, is anyone out there on it or found any problems getting on it? I have to go back in 2 weeks for results of recent IgE results

    Regards Lorraine x

    Hi Lorraine, it should depend on the results of your had allergy tests, and whether they show you have allergies to environmental allergens (ie those you cant avoid). Things like pollens, moulds, fungi, grass etc.... Unfortunately I doubt they will give you Xolair for allergens which can be avoided like animals and sprays - they will simply tell you to avoid those things. It wouldn't make sense for them to spend thousands of pounds on treating animal allergy so people could keep a dog in the house. I have a dog and four cats at home but thankfully Im not allergic to them, however if I had been, given how severe my asthma is I would have had little choice but to rehome them all.

    Hopefully once you get the results of your IgE levels and what you are allergic to they will make a sensible decision. As its already been said, Xolair is hideously expensive, so its only available in specific clinical circumstances.

    Lynda

  • It wouldn't make sense for them to spend thousands of pounds on treating animal allergy so people could keep a dog in the house. I have a dog and four cats at home but thankfully Im not allergic to them, however if I had been, given how severe my asthma is I would have had little choice but to rehome them all.

    Hopefully once you get the results of your IgE levels and what you are allergic to they will make a sensible decision. As its already been said, Xolair is hideously expensive, so its only available in specific clinical circumstances.

    Lynda

    +1 for this - also, if you have narrow, specific allergies to dogs or cats or bee stings etc then they can do a more effective and much cheaper treatment which targets those specific allergens rather than blanket-mopping-up of spare IgE in your blood.

    I've also heard from my consultant that the perennial allergen problem needs to be long term, not new/recent. I don't know what the cut off for that is but they need to have evidence of an in-vitro (ie actually observed in you) allergic response to an allergen that can't be either avoided or treated on its own for years not months. The escalation of symptoms can be within the last 12 months, but it needs to have been a problem for many seasons, otherwise there are multiple less drastic treatments to try first.

    I say this because he said it was in my favour that I had very serious problems with hayfever and mould allergies around 15 years ago. I was treated for these with kenalog (injected pred basically) and that gave me some years of reduced difficulty.

    Remember that Xolair has a ton of potential side effects. My understanding from reading of people's experiences of it is that it's not always a pleasant treatment to go through, though it beats not being able to breathe. It also involves day admission and then half-day admission to hospital for each treatment.

    There is also a small but relevant increased risk of cancer (and we have no idea whether that will turn out to be higher over 10 or 20 years because the treatment is so new), and the risk of parasitic infection. If you travel abroad or work with primary school children (or have a small child), or you work with livestock or in a vets the parasite issue isn't trivial. I live on a sheep farm and I'll need to take extra precautions if I do get Xolair because liver fluke and ticks are rife here.

    None of this is intended to minimise your need - just to open your eyes to the framework around prescribing Xolair. It's not just them being tight financially, it really should be the end-of-the-line treatment in people who have exhausted all the less drastic options and are suffering daily symptoms with regular dangerous exacerbations, or who can only achieve control with regular high doses of oral steroids or on maintenance steroids.

    Still - it sounds like the conversation with your consultant was very muddled! Can you ask your GP to go back and discuss it with your consultant and then have a double-appointment to get your head straight about it? It would be worth getting your IgE levels checked by your GP a couple of times before that too (say, a week apart). This is a perfectly valid use of NHS resources - don't be shy!

    hth,

    C

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