British Lung Foundation


Hello all

I am a severe asthmatic patient who has responded well to xolair. I was on a monthly dosage of 225mg every 4 weeks with IgE of 340. Was on it from March 2012 to March 2014. I stopped it myself as I knew I had underlying issues but every medical team I dealt with put it down to steroids (which I came off January 2013) or Xolair.

I know it wasn't Xolair so came off it myself to prove my point. So I was off it from March 2014 to September 2014. It severely affected my asthma and I got admitted from 1st August to 9th August. So I was off the xolair for 6 months.

They re-tested my IgE which came back at 738 so dose got changed to 450mg every 2 weeks. I want to go back to monthly but I keep getting told that the guidelines dictate you need to be on fortnightly.

I am sure I can go back on monthly with previous numbers but I need some medical evidence from medical journals or articles.

I have a consultation with my main asthma doctor and want to be fully prepared with medical evidence so he can't refuse me.

Also initially I was booking it monthly without the old asthma nurse realising and I responded really well, I have tried to book it monthly with this new asthma nurse but it doesn't always work.

In my opinion if it works monthly and I'm responding well, I should have it monthly and save NHS money as opposed to having it fortnightly when I don't need it.

Thanks for any help/advise.

Also sorry for the long post.

Nimz x

2 Replies

You are probably best taking medical advice from your doctors, rather than from medical journals and articles. That could present all sorts of dangers for you. Good luck with it all.

1 like


I am still on the xolair. Not going to come off it. I just want medical evidence to support the fact that once you start xolair IgE and come off it. The IgE doesn't get retested and then redosed. You stick with the original reading that was taken prior to starting the xolair. I remember reading it somewhere but can't remember where.

From past experience you can't trust doctors or anyone in the medical profession 100%. You need to do your own research.


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