has anyone tried too take this drug has it helped?  I was told there was a research done in Germany that it has really helped mast cell patients, I know its expensive but wondering if anyone has tried it and if they have had any positive results or neg results

I've heard of some people with high IgE levels being started on it recently, but I haven't heard how they're doing yet. I will be interested to hear.

I am on Xolair injections now for my Autoimmune Mast Cell Disease. I havent noticed if they are helping or not as its only been a couple of weeks, but the muscle aches and joint pain I feel have gotten worse. I will let you know if it works for me. My insurance approved it right away with no questions, all insurances I guess are different on how much they cover or if they cover it at all.

Dr. C has suggested this for my son as well but he has a low total IgE.  

Interested in others experiences.

Julie- are you noticing any difference in your daughter with the Ketotifen?  I had a reaction so am hesitant to try it with my son.

I wanted to give everyone an update on Xolair injections. I have been getting them now (300mg) for a few months once a month and can tell when they are starting to wear off, as the anaphylaxis comes back full force. My doc has now said I will get them every 3 weeks instead of every 4 as its around the 3rd week when things come back. I still get hives and flushing every day, but the Major Attacks I feel are more controlled. Just wanted you all to know that I think its worth it if your insurance will cover t.

I never started xolair as my levels were not high enough I have zero allergies per Dr. C so I guess I should be thrilled with that

I didn't know that Xolair was helpful for people with low IgE.  Is there another marker that indicates it could be helpful?  How is it justified for insurance?