Xolair/Omiluzimab

[floating_]

Hi, so just seen my Allergist and they've suggested this medication for my MCAS etc. But on the leaflet it speaks about Asthma and I know it's used in asthmatics. How do you guys find it?

[twinkly29]

Basically it either works brilliantly or it's not much help I think. Not everyone is eligible to try it for asthma though, no idea what the criteria is for other conditions. Actually I didn't even know it was used for other things!

Even those for whom it's good for asthma, I imagine it would be impossible to say how well it would work in someone else who also has it for a different condition 🤔

[floating_ in reply to twinkly29]

Yeah it is! Usually "end of the line" treatment as my allergist put it (lol). And some other criteria I forget, it's on the leaflet. 😂 There was another on the notice board, for trial called Ligeluzimab, this can also be used in chronic spontaneous urticaria and asthma apparently? So that's new!

Definitely yeah. Did search over on the HealthUnlocked forum for UKMasto and there's only one thread on it! Just trying to see how people get on with it really. Although obviously I might get on with it differently. 🤷🏻‍♀️

[twinkly29 in reply to floating_]

End of the line - ugh that sounds a bit grim! 🤣Hope it works though if they try it!

[floating_ in reply to twinkly29]

Yeah, I was like "oh...well, that sucks" lmao. But I'm basically maxed out on what I'm taking to manage it. So if this works it'd be great!

Will probably make another thread with how it goes!

Hope you're doing okay.

[Js706]

I’m on it for asthma (2nd trial on it) and don’t really have any problems. I feel a bit sore/tired out on the day of the injection but that’s about it really!

It hasn’t been a wonder drug for me but it has definitely improved things and I’m pretty sure I have less weird allergy-type symptoms when I’m on it too

[floating_ in reply to Js706]

That's really good to hear!! Improvement in any area I'd be grateful for tbh lol. Fingers crossed they agree for me that it's the next option, and maybe I'll have good results too. How long are people typically on it?

[Js706 in reply to floating_]

Will keep everything crossed! It varies depending on the condition. For asthma it’s potentially life long depending on response (you get reviewed at 4 months to see if it’s helping and extended to a year if so, not sure when the next review is after that).

For things like chronic spontaneous urticaria/angioedema, the other thing it’s licensed for I’m pretty sure it’s a set number of injections but can’t remember how many off the top of my head. But I know it’s meant to have a really good remission rate for these.

For MCAS I don’t think it’s very clear cut at all because it’s off license/experimental as far as I know. I’ve seen a couple of people who are on it for MCAS and it seems to be reviewed based on benefit a bit like for asthma but I don’t know how it works officially

[floating_ in reply to Js706]

Ohh, interesting. Just got another appointment through for my respiratory consultant so will let him know what my allergist said, maybe he might have an idea?

This is all looking a little complex.

Yeah had a blood test for baseline basophil histamine release assay (that's a mouthful), but apparently that requires a longer time on the Xolair if it's positive.

Hope you're doing better btw! Will get to your message in a bit!!

[hilary39]

There are a lot of great posts on Xolair if you search the archive! I’ve been on it for two years and have had a good experience and have had to take prednisone less often.

[floating_ in reply to hilary39]

Been reading a lot of them, they're all really promising! Let's hope it improves my asthma and the urticaria. 😂

[angievere]

It’s been a wonder drug for my son. Turned his life around.Good luck and I hope it works for you.

[discoballs]

I would like to give Xolair a try but can't get a prescription :/

[floating_ in reply to discoballs]

Sorry to hear that.

[Evesham]

I’ve been on this twice now. Second time around my symptoms have improved tenfold. I am very grateful to be getting this.