Hello everyone! It's been awhile. Hope everyone is doing well this new year!
I'm wondering if anyone has tried Xolair?
I have autoimmune urticaria, and according to two doctors, MCAS.
I emailed Sr. Castells last summer and she said it sounded like I did not have MCAS, but only autoimmune urticaria. She suggested I look into taking the Xolair shot.
I went to my fathers rheumatologist three weeks ago (i havent been feeling well) and he said he thought it was likely MCAS (I was surprised he had even heard of it!) he referred me to "the best in town" allergist. My appointment is this Wednesday. Unfortunately I saw this same allergist a year ago and he pretty much laughed in my face.
I am hoping that this time I can go in better prepared to explain my situation. I tend to break down and get all frazzled at the doctors office, so I come off as some crazed hypochondriac!
Anyways, I emailed Dr. Castells again over the weekend, and she said that MCAS could be a secondary disorder to autoimmune urticaria. She said that she would be willing I see me, but that if I could find a local doctor, that would be best.
She mentioned the Xolair shot again and said that it could potentially treat AU and MCAS. Has anyone tried this? It's a drug for severe treatment resistant asthma, but it is close to being FDA approved for AU.
I have done some reading on it. It doesn't sound like there are two many worrisome side effects (besides anaphylaxis rarely!) but one thing that concerns me is that it can cause respiratory infections. I got this on two separate attempts at trying singular, which is also an asthma medication.
Hmmmmm.....
Hope this new year brings everyone hope, health and answers! And LOVE!
Brigitte