Xolair

Hey,

Thought I’d introduce myself first. My name is Sarah and I’m a moderate (ish) asthmatic on all the usual meds. I’ve had a bad run recently with 3 admissions to the high dependency unit over the past 6 weeks. I’m now out and doing well.

My Consultant has recently informed me that I almost certainly qualify for Xolair. I’m curious as to whether other people here are on this drug? I also happen to be a junior doctor working in respiratory medicine (oh the irony!) I’m rather anxious about the thought of taking a relatively new drug with as yet unknown side effects. I’m also loathe to take any immunomodulating drugs before I have my family.

I was just wondering what other people had been told re possible long term side effects etc? I appreciate that I'm in the relatively lucky position of being able to decide whether I want a drug that some people are fighting for. I apologise if this post comes across as at all ungrateful.

Many thanks

STX

15 Replies

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  • Hi Sarah,

    Sorry to hear you've been having a bad time of it; there are a few of us asthmatic doctors around the place, so we can appreciate the difficulties of trying to combine hospital medicine with uncooperative lungs!

    I have brittle asthma and have not tried Xolair myself - my consultant is currently applying for my PCT to fund it, although I may not get it as my IgE is not strictly within the criteria - it's a little too low. According to my consultant, the PCT is more likely to award funding to those who have had multiple ICU admissions (which I have) as the cost of these is usually much greater than the cost of the drug. I'm not sure about HDU admissions.

    I know of two people locally who are on Xolair, both of whom have brittle asthma with ICU admissions. One has, I believe, seen a dramatic improvement, and the other, a friend of mine, has seen some improvement.

    In terms of side effects, the most commonly talked about ones on here seem to be anaphylaxis and other allergic reactions. I understand that the initial studies showed a very marginal increase in the rate of certain malignancies in patients on Xolair, although many consultants feel that this was coincidental. My consultant has also expressed concerns in the past about renal problems from immune complex deposition with long-term use, although I don't know that there's been much evidence of this so far. I'm sure you've had a look at the company website (www.xolair.com).

    I can completely understand your misgivings about taking the drug, and of course it's a decision that only you can make. For me, any potential risk is more than outweighed by the potential effects in improving my life and allowing me to reduce my oral steroids, which are having quite a lot of severe side effects too (diabetes, hypertension etc). It does depend, though, I suppose, on the impact that your asthma is having - you mention that you have been having a bad run recently, but you don't really say what things were like before that. As we all know, asthma can be an incredibly variable and fluctuating condition, with no apparent rhyme or reason to it. I think, if I were in your situation, I might be tempted to wait and see if things settle down again.

    I hope you are continuing to recover and are not rushing back to work, although I'm guessing from your age on your profile that you are probably an F1? - I hope that the pressure to get enough time in to get full registration at the end of the year is not causing you to go back too quickly? It was much easier, at least in that way, in my day (how old that makes me sound! - I qualified in 2001). We did two six month jobs and you only needed a minimum of 4 months medicine and 4 months surgery to get full registration, so even though I did end up taking significant amounts of time off, I was still okay. My husband is now an F1, having qualified on the Graduate Entry Medicine programme, and we are currently holding our breaths (figuratively speaking!) that I will not be too unwell during his surgical attachment (he's just finished medicine) so that he will get the full 4 months.

    I'm sure others who have more direct experience of Xolair will come out of the woodwork soon, but do feel free to keep in touch, especially if you have any queries about juggling medicine and asthma!

    Take care

    Em H

  • Hey STX (and EmH)....

    we're getting quite a collection of doctors with bad / brittle asthma on the site... what do you think the collective term would be? ie like a gaggle of geese?

    STX -Have PM'd you - just shout if any q's - though think EmH has it all covered ;)

    EmH - I wasn't strictly within the IgE limits - but as you say, a day or two in ICU funds quite a few xolair jabs! Hope things going ok with you. I'm still stuck in with the endocarditis - was hoping to escape in the next day or so - but sadly my lungs are indicating they might be thinking otherwise!

    is gonna be interesting tomorrow when the new teams start.. and i have to explain it all from the beginning...AGAIN!

    bye for now..

    KSD

  • A slight aside, but I thought that last week NICE approved funding for Xolair for all patients in England. My dad phoned me up all excited after reading about it in The Telegraph, but I had to remind him that Xolair disagreed agreed with me in a big way in its trial so there's no way I'll be going back on it. Anyway, for those of you who've been fighting for funding for this med, I thought this info would be of interest.

    Becky.

  • Hi Becky,

    NICE has approved Xolair, finally, but it's not quite a blanket approval for all asthmatics. What the summary actually says is:

    'Omalizumab is recommended as a possible treatment for adults and young people over 12 years with severe persistent allergic asthma when all of the following circumstances apply.

    - When the person's asthma is still severe and unstable despite best efforts to control it with other asthma medicines taken as directed by their doctor.

    - When the person has stopped smoking, if their doctor feels it is appropriate.

    - When the person has allergic asthma. This should be confirmed by checking past symptoms and skin testing for allergies.

    - When the person has had at least two asthma attacks within the past year that have needed admission to hospital, or when the person has had three or more severe asthma attacks within the past year, one of which has needed admission to hospital and the other two have needed additional treatment in an accident and emergency department.'

    (http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11894)

    That does of course mean that severe asthmatics will be eligible, if they have any indication of allergic asthma. Individual PCTs can still impose extra restrictions, but we have more to fall back on if we fit these criteria and our PCT doesn't agree to fund it. There isn't any specific level of IgE mentioned by NICE, but PCTs could well argue that having a low IgE means that allergic asthma hasn't been confirmed.

    Of course, the usual contraindications to Xolair still apply, including people who have a sky-high IgE.

    Em H

  • EmH, thanks for the reminder, it won't stop me asking you never know they might one day find a way of giving to the ""sky highers""

    My phone was red hot when The Sun (what does that say about the people I know) had something about Xolair being a wonder drug and I have received the article in the post from 2 kind people too. I have been good so far and gently explained I can't have it but the next person who asks may well get the treatment the lady in the dizzy space got (see camping)

    Bex - frustrated

  • Bex, with your IgE the dose you would require would deplete national Xolair stores!

    Seriously, the problem with those with a sky-high IgE is that the dose given is based on IgE level (and weight). If your IgE is very high, the dose you would require would be toxic, and could cause all sorts of problems, including kidney damage. There could also be a much higher risk of anaphylaxis in people with high IgEs.

    So, while it might seem theorectically that those with a high IgE would be the ideal people to benefit, sadly at the moment the treatment is not suitable. There are a few other monoclonal antibody treatments in testing at the moment, so it may be that something else will come along in the next few years.

    Em

  • Hi St,

    I am just about to come to the endof the 16 week trial for Xolair. I get my last dose on Wed. Although it took about 2 and a half months I have noticed a signicicant improvemrnt in my asthma symptoms. ( to me any way). I am able to have some respite at night. Have even managed a few full nights sleep. Up until Sun night I had been off pred for a few weeks, which although have managed a few days off, is a first in over two years.

    I am a paed nurse so understand some of your difficulties. I have managed a full week at work, but do still have some problems, but can manage a ward round, which I couldn't before. The cons on the ward I work on have noticed a difference in me. They keep telling me its nice to see me happy and smile again. I didn't even realise it showed how unhappy I was as I always try to happy.

    I have had a few side effects., Got quite scared after the second dose, but wasn't to ill after third. But anything beter than ending up in ITU alot.

    Please feel free to PM me if you have any further questions

    Carolyn

  • Hi

    I had a trial of xolair last year which didnt help me at all.Although I didnt actually fit the criteria my weight for one and my high Ig E think it started at 1500 went up to 5000 midway through so was stopped.

    This isnt to say it wont work for you.

    Penny

  • The IgE levels often do go up when Xolair is started - this isn't to say that the drug is not working, it's just to do with the way the levels are measured and the effect the Xolair has on the accuracy of the test. The response to Xolair is usually assessed clinically rather than on blood tests for this reason. Just thought I'd point this out in case anyone else has experienced their IgE levels going up and is worried by this.

    Having said that, it does sound like you weren't really suitable for Xolair anyway, Penny - even your starting IgE is a little high and you say your weight wasn't in the criteria either. Unfortunately it's not suitable for everyone. I do hope you manage to find something else that helps you - as I said, there are a few alternatives in the pipeline.

    Em

  • Penny there is no way you should have had Xolair it is not supposed to be given if your IGE is above 700 and that is a I am told by the RBH the absolute top there are some places in America where if the person is very overweight they are on a review case by case basis letting them do it with IGE's of upto 1000. I have a slightly higher IgE than you and no-one will touch giving it to me with a barge pole as it will probably cause irreversible damage to kidneys and make me seriously ill. I am amazed your hospital did it. I hope you are OK.

    Bex

  • HI

    Like what?

    dr Mansur is scratching his head to find where to go next for me-not helped being allrgic to aminophyline and hydrocortisone!!

    Sorry but would like to know whats in the pipeline

    Penny

  • Hey sorry to butt in here but i have a q...

    How does xolair work in the longterm- say you had some response in the 16 week trial, and it improved your asthma, would that be it, or do you carry on having the injections...if so howlong for? Forever?

    Intrigued!

    Em x

  • Hi,

    The Xolair/kidneys issue - if someone with very high IgE was given a dose of Xolair appropriate to their IgE, it would be a toxic Xolair dose. When the drug is given, it forms complexes with the IgE, and too many immune complexes in the blood can cause kidney damage. I'm assuming, Penny, that you were given Xolair at a dose at the upper end of normal, rather than the theorectical dose for your IgE - there is no particular reason to think that this would cause kidney damage, but it is likely that it just wouldn't work, as it seems you discovered.

    Emma - if you respond to Xolair, you are usually left on it indefinitely - it probably doesn't continue to work once it is stopped. This is going to present problems in the future - the drug has not really been tested long-term, and it's not known whether it is safe in pregnancy. We shall see.

    In terms of what's in the pipeline in the future - there are a few different treatments that are in early (Phase I) trials.

    The inflammatory cascade contains dozens of chemicals, any of which might provide potential targets for asthma treatment. Currently, monoclonal antibodies targetting the chemical interleukin-13 are being tested with particular interest (http://www.cambridgeantibody.com/home/products/cambridge_derived_products/cat354).

    There are other monoclonal antibody treatments that are also being tested.

    There is also a new drug, currently only called EPI-12323, which is claimed by the manufacturers to be a 'non-glucocorticoid steroid' with anti-inflammatory and bronchodilatory properties (http://www.epigene.com/about/overview.html). The idea is that it would have steroid-like actions, but would not cause the side effects that steroids do.

    These are just a couple of examples that have been mentioned recently. There are probably more than a dozen different things that are either in animal trials or the early stages of human trials.

    These treatments are in the very early stages of testing - Phase I and II trials, which are really only designed to test the safety of the drugs and the way the body handles and metabolises them. In all cases, there are good animal studies that show that the drug does have promise in asthma treatment - otherwise the drug companies would not be wasting money trialling them. We are a long way off, though, from knowing whether these drugs really do have an effect in severe asthma, and even further off from them being proven to do so and licenced for use in severe asthma. Most of the Phase III trials (the ones that determine if they work), if they get that far, will exclude severe/brittle asthma, as this is common in clinical trials. The drugs will therefore not be available for general prescribing to severe asthmatics for some years - the typical time from Phase I testing to licensing can be 10 years or more. Nevertheless, they are in the pipeline, so we can be a little encouraged.

    Hope this helps

    Em

  • Hey,

    Thanks to everyone for their very interesting comments.

    I've had a long think and decided that for me the potential risks of Xolair outweigh the benefits at the moment. I plan to see how the rest of the winter goes. If i have another 3 admissions I may well change my mind!

    I hope everyboy else who would benefit from Xolair maanges to get funding for it.

    STX

    PS> an aside anybody notice any problems mixing theophylline with alcohol? I suspect as a dr I should know the answer to this one :-) !

  • HI

    The dose I was given was two injections every fortnight -as you say upper end not tailored to my Ig E at all.But i presume it was worth a try.

    Penny

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