Options after Xolair stops working?
Posting out of desperation- sorry for the longwinded background but I just want to know if there are any treatments that could possibly help at this point, any responses are appreciated, truly.
diagnosed with mcas (severe/anaphylatic) since around the onset of symptoms in 2020 (Covid, some other environmental factors didn’t help). At my worst I’ve not been able to go outside, go on walks, down to under 10 foods etc. over the past 5 years every med has helped a bit- currently on Allegra famotidine cromolyn montelukast ldn quercetin hydroxyzine, epi and albuterol as needed, and for almost 2 years xolair. Xolair made the hugest difference at first, never back to normal but I could work out and was up to ~30 foods, after a year though, it stopped lasting as long. My dr opted for us to go up to 375 from 300/4weeks. Had a drawn out bad reaction that whole month. Went back down to 300, now had an on and off reaction- never back to previous baseline and loosing foods, but not as acute as when we changed the dosage, it just barely worked at all. Dr opted to try 150/ two weeks- I’m on my 2nd week a couple days ago, and similar feeling of constant mild anaphylaxis/or at least asthma and allergic symptoms (not enough for an epi just yet).
Dr said I likely developed antibodies etc, and were just waiting for remibrutinib to be approved for use in the US. Anyone have any similar experience with Xolair? Are there any mcas treatments I’m missing? I’m feeling so broken down mentally and terrified Ill loose what’s left of my life to this
Posted Sep 13, 2025, 10:58 PM UTC