Xolair and IgE of >5000

Hi,

I had my IgE bloods taken a while ago and my consultant didn't tell me the exact figure at the time except that it showed I was very allergic to House Dust Mites and Pollen I think, he told me the results in a banded system and I was in band 5. My hospital is now trialing Xolair in selected patients and I meet the other criteria such as number of admissions including ITU and inadequate control despite high amounts of various drug therapies. At my appointment last month my consultant said that I could do a 12 week trial of Xolair with injections approximately every week. Yesterday my respiratory nurse was sorting out my Xolair application and she told me my IgE is over 5000 and said I would have to come in overnight to have my Xolair injections. I am a bit concerned as i thought Xolair was only recommended to be used in patients with IgEs between 30-700 approximately? Otherwise it could result in damage to the kidneys? It feels like that my consultant and nurse haven't thought this through but I assume they have.

My questions are:

-How safe is Xolair going to be in an IgE of >5000?

-Is Xolair worth trying at all with an IgE like this?

Simi x

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Er are you sure they said 5000? Becaause A) Xolair will be of no use to you the base the dose on your IgE and last I heard it was unsafe to give Xolair to people with an IgE of over 700. In America they are experimenting with IgE's of up to 1000 b) 1000 is considered to be a very high IgE 5000 would smash the UK's highest recorded IgE by 3000+

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The nurse definitely said >5000 but I don't know maybe she was looking at a different measurement/unit or something. My consultant put me in the band 5 bracket if that makes makes any difference? With there being bands 1-6 with 6 being the highest.

simi

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Wow! my initial IgE levels were around 1000-1500 and my consultant with years and years of experince had never had anyone with levels that high. Don't be dismayed though, your IgE level varies quiet dramatically, get them to recheck it. I had mine done weekly for a about 6 weeks and when they were 700 I was started on xolair which although has dramatically improved my life has not cured me!

Get them rechecked.... good luck

Truly x

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Thanks truly, I spoke to my GP about it today and unfortunately he couldn't find the letter from my consultant which stated what the values were, so my GP has sent me for repeat bloods of IgE and FBC and some other stuff. And if theyre different he will let the consultant know. Maybe my resp nurse read it off wrong or something!

simi x

[charliemr04]

Hi,

I know im very late to the party. I had my ige checked with the nhs and private. I'm on xolair and my ige is 40-50 thousand. Had no issues what so ever x