Hi all, I had my first Xolair injection 3 weeks ago and since then I’ve had an itchy rash around my neck and chest area. My scalp and ears are also itchy. It was really strong the first week and would wake me up.
Does anyone know if I’m likely to be taken off Xolair at my next appt? Could the rash improve over time - might my body get used to the Xolair? Or is it likely to stay the same/get worse?
Hi
It’s defo something that needs reporting to your team and seeing what they say. They may decide to see how it goes after the next dose or they may decide that you need to stop it... unfortunately hives are an indication of a reaction to the xolair... if you took a photo of it at its worst make sure to show them (or take one now jic it’s cleared by appt time)
Everyone reacts differently. For example I found that the headache and tingling lips calmed after the first few doses, however dose 5 started bigger related angiodema and urticaria flares which resulted in the xolair being stopped after dose 7...
Sorry for not having any clear answers for you and hope things settle soon x
Thanks Emma! I emailed my asthma nurse last week but no reply yet - I know she’s stretched though. I’ve got some photos to show her when I go back in a week. I’ve never had a rash before in my life so I wonder what exactly it is in the drug I’m reacting to. I think I would actually prefer this itchy rash to not being able to breathe so I hope they keep me on it 😂 Tho I guess it could lead to anaphylaxis...
Do you know whether there’s another biologic option for allergic asthma?
How are you doing now? Sorry to see you ended up in hospital again!
Nucala and Duxiprent are good alternatives that seem to have fewer side effects. Sorry to hear you're going through that! I'm on my 7th dose of Xolair but have also been having adrenal insufficiency since right around when I started it so I can't tell which symptoms are attributable to which...! Good luck and take care.
Thanks - I think they’re only for eosinophilic asthma though which I don’t have... Pretty gutted about the Xolair reaction as I’ve been so hopeful about it. I’ll see what my asthma nurse says next week.
Sorry to hear about your AI! I hope that improves for you. I guess that was caused by oral steroids? Hopefully the jabs work and you can come off the steroids!
Oh bummer I’m so sorry to hear that. For what it’s worth I have low eosinophils but two pulmonologists have told me they’ve switched over patients with low eosinophils who didn’t tolerate xolair to duxiprent with success (in the context that it was an option for me if xolair didn’t work out).
Did the rash come instantly after the xolair? It couldn’t be anything else?
Bodies are so complicated! :/
Oh that’s very interesting, thank you for sharing! I don’t only react to allergens so perhaps another injection could work for me... I’ll bring it up if they do decide to take me off Xolair and don’t bring it up themselves.
Yeah... my ears got quite hot and itchy about an hour afterwards and then the rash started the next day.
Indeed - we all have such individualised responses to things!
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