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Donkeyfarts

Updated 1y ago

Looking for experiences with Xolair for Mast Cell Activation Syndrome

I’m maxed out on all my mast cell stabilizers, h1, and h2 blockers, and do a Benadryl infusion 3x a week and still can eat anything by mouth without getting anaphylaxis. My steroid taper didn’t work, so I’m thinking the next step is to try Xolair. I’ve heard it’s either amazing, or people have super bad reactions to it. Is anyone on it and what has been your experience?

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Lunate

2y

I've been on Xolair for about 2, maybe even 3 years now, and I don't regret it. It hasn't been a perfect cure or anything, but especially now that we've figured out the right injection schedule for me, it DEFINITELY has made a positive difference. I was really nervous about trying it and hesitated for a long time, so I understand having reservations. If I were in your shoes though -- not able to eat anything by mouth, Benadryl infusions, steroids -- I would definitely give Xolair a try. I hope things improve for you soon!
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Lonnie

2y

I am taking xolair and it has helped. My body has acclimated to the dosage so I had an increase.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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