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?

Your answer

Lonnie

2y ago

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

Lunate

2y ago

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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