Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Xolair? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1389037278 Message started by brigitte on 01/06/14 at 07:41:18

Title: Xolair?
Post by brigitte on 01/06/14 at 07:41:18

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! :D
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

Title: Re: Xolair?
Post by mountain girl on 01/09/14 at 11:53:43

I don't qualify, but my Immunologist told me that Xolair was a good option for chronic UP. He is involved in the stage 3 trials for FDA approval of the use of Xolair in UP. I heard that the drug is very expensive.

Title: Re: Xolair?
Post by brigitte on 01/13/14 at 15:22:29

It is extremely expensive :( but at this point I am willing to do just about anything to get a quality of life back. The last 4 years have been a waste of life:(

So I did the blood test last week to get my IEG levels. I guess these dictate how much Xolair to administer.
The allergist, though completely annoyed by me, said he would help, but only after telling me that most doctors would turn me away and wouldn't want to deal with someone looking into taking Xolair. Apparently the paper work is a load on the doctor.
So we'll see what happens.

I have been able to talk to Dr. Castells via email a few times. She is so sweet to have corresponded with me. She thinks Xolair would be a great option for me. She said it treats AU AND MCAS. That's why I was wondering if anyone on here has had luck with it with MCAS??