Xolair: Hello all I am a severe... - Lung Conditions C...

Lung Conditions Community Forum

56,244 members66,867 posts

Xolair

CHI_F profile image
2 Replies

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

Written by
CHI_F profile image
CHI_F
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Toci profile image
Toci

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.

CHI_F profile image
CHI_F in reply toToci

Thanks

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.

Not what you're looking for?

You may also like...

XOLAIR

Hi everyone, I do hope you are managing to stay well and safe. My son has CF and various other...
Jamesmum profile image

Xolair jabs

Hi all I told you last week i was starting on jabs to help with my breathless,well went this...
marian-b profile image

Anyone familiar with Mepolizumab (Nucala or Xolair)

I am writing to get some information concerning either Nucala or Xolair. Both are new biologics for...
jimborasco profile image

follow up on 3rd xolair injections

hi all sorry ive not been on for a while,just haven't been feeling to clever,well ive had my 3rd...
marian-b profile image

Xolair 59 year old still here..an update

I wanted to update all that were so kind to me when I was at my lowest. Also anyone on this drug...
dawnza profile image

Moderation team

See all
moderator_AandLUK profile image
moderator_AandLUKAdministrator
AsthmaandLung profile image
AsthmaandLungAdministrator
Claire_ALUK profile image
Claire_ALUKAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.