Severe asthma xolair: Hi, I’m hoping... - Asthma Community ...

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Severe asthma xolair

wheezy01 profile image
7 Replies

Hi, I’m hoping someone has had a similar experience to me. I have been trying xolair for the past five months during this time my asthma has still got worse and I was recently in resus for the first time.

Xolair is not working and I’m curious what I can try next if anything.

I’m also rather scared about how bad my asthma is now. I was In resus and after 3 Nebs I was given IV magnesium for the first time. I don’t want to end up needing ICU and intubation but I’m scared that I’m 3-5 years it might come to that stage.

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wheezy01
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Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Hi, sorry to hear the Xolair doesn't seem to be working! There are newer drugs you might be able to try though if you stopped the Xolair - reslizumab or mepolizumab and some more on the way. These are aimed at eosinophils and you would need to ask your consultant (I'm assuming you have one if you are on Xolair) about these and being tested to see if you would qualify - I think mainly seeing if you have high eosinophil levels as you clearly seem to have a lot of bad flares. You could also try ringing the AUK nurses to talk through it.

Re resus etc - not great I know and hope you don't have too many flares like that, but if it is any help I started having attacks like that with resus, magnesium etc about 4 years ago and while there have been far more than I would like, it hasn't escalated to the HDU or ITU and intubation level! In an odd way it can be easier when they do give me all that as the slower less acute flares are very annoying - there.is nothing I can do about them.as I am often resistant to pred, except stay in bed.

I hope this helps a bit - it is frustrating but hopefully one of the newer treatments which targets a different part of the asthma might help.

Edit: meant to.say I am.not eligible for any of the current new treatments as my asthma is not allergic or.eosinophilic. if one of the new ones works for you yiu might well find you don't keep having bad attacks.

Twed2 profile image
Twed2

I was on xolair but came off it it didn't not help my severe brittle asthma I recently had a three week stay I intensive care it was awful but they where fantastic with me I don't know how I survived so if it happens you have to go into ICU trust me you will be in the best hands take care

M-D-F profile image
M-D-F

I know how you feel it is a worry as to what is lurking in the future.

I did a four month trial on xolair, and I don't think it helped, it kept me within the 170-250 peak flow range and of steroids, then in Dec I had a flare up requiring prednisolone.

I have been placed on another four month assessment (starting yesterday), and I know this is only day two, but I am not any more sure that this is the answer to an asthmatics prayer.

I am not putting Xolair, it is just not improving me.

Mark-f profile image
Mark-f

Hi .... I was on xolair for 12 months and unfortunately it didn’t work for me either and I was unable to drop below 20mg of pred. So consultant decided to stop. I am now back on my maintenance of 25mg and have been for some 3 yrs. I’m also in a similar situation. Waiting on a decision about mepolizumab bug my bloods don’t meet the criteria because of the pred.....

has mepo been mentioned to you ?

wheezy01 profile image
wheezy01

I’m going back on Thursday to see what my options are now.

Matman profile image
Matman

You may find the Comment Thread on the below link of some interest, while you’re reflecting on additional Biological Drugs (MABs) that you may be offered.

healthunlocked.com/asthmauk...

Aido101 profile image
Aido101

Hi there, I know how you feel. I was in Resus twice in 2017 literally walked into the emergency department and was taken in right away. Given IV magnesium and lots of nebs and oxygen. They were ready to incubate me when I started coming around to the treatment. I know how scary it is but you get way better care in resus and they literally have everything there at arms length if something goes wrong. Don’t worry I know it’s scary but if the asthma is that bad your in the best place. Regarding Xolair I have just started it so fingers crossed it works.

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