miss:
I asked my doc about this as he was one of the docs who did the phase 3 testing on this to get FDA approval as it's mainly an asthma drug & he's one of the best in country for asthma. My luck is my asthma is no problem it's SM that he only dabbles in. I was asking for my friend Manuella in Canada who has MCAD. He said that he thought that it could help for that, but in my case of SM he didn't think it would at all. I thought there where a couple of forum members talking Xolair
but could be wrong.
MikeV

I posted this promising study earlier, but I just tried to search for it and the search function on the forum and it didn't show up.  I searched again using Google advanced search (specific to this site domain) and I got it:

Xolair and MCAD study - some success
06/17/11 at 04:17:25  
Anyone have experience with Xolair? I know it's been quite successful in controlling chronic urticaria and its mast cell-related symptoms in  an ongoing US-based trial.

Omalizumab Treatment of Systemic Mast Cell Activation Disease:
Experiences from Four Cases

Internal Medicine
Vol. 50 (2011) , No. 6 pp.611-615

Gerhard J. Molderings1), Martin Raithel2), Felix Kratz3), Marc Azemar3),
Britta Haenisch1), Sabrina Harzer1) and Jürgen Homann4)
1) Institute of Human Genetics, University Hospital of Bonn, Germany
2) Universitätsklinikum Erlangen, Medizinische Klinik, Germany
3) Tumor Biology Center, Germany
4) Evangelische Kliniken Bonn, Germany

Abstract

We report on the outcome of 4 patients with therapy-resistant systemic
mast cell activation disease (MCAD) treated with the anti-IgE monoclonal
antibody omalizumab in compassionate use.

Two patients achieved an impressive persistent clinical response to
treatment with omalizumab.

In the third patient symptoms gradually improved.

In the fourth patient omalizumab treatment had to be discontinued
due to intolerable mast cell mediator-induced symptoms.

In conclusion, omalizumab can lessen the intensity of the symptoms
of systemic MCAD.

Hence, omalizumab should be considered as a therapeutic option in
cases of systemic MCAD that are resistant to evidence-based therapy.

Key words:
systemic mastocytosis, omalizumab, tryptase

http://www.jstage.jst.go.jp/article/internalmedicine/50/6/50_611/_article
full article
http://www.jstage.jst.go.jp/article/internalmedicine/50/6/611/_pdf
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We have been offered to try xolair since my husbands IgE are insanely high...there are reactions in 30% of the patients and my husband is so reactive I'd like to wait a couple more months. What are the long term effects? There is no guarantee that this is a permement fix.
Dr Castells and our allergist here have had great results with it,

We are still trying to decide if we should do 6mo of Enbrel to calm his immune system down and then 6mo xolair to lower ige's. This is direct cell targeted therapy and is supposed to be very effective.

I would love to speak with anyone who has tried either of these drugs...