Katybug Posted September 18, 2012 Report Share Posted September 18, 2012 So, I keep having significant reactions to my allergy shots even though I am also on H1 and H2 blockers. I also had edema in my legs from some mild exercise I did this weekend. My immunologist gave me the official MCAS dx today in addition to severe classical allergies and multiple food sensitivities. He feels that we will never get to the bottom of all of my issues until we get the allergies and/or MCAS under control so we can then see what symptoms we are left with and can then look for any other underlying issues (if there are any.) He said I am so reactive that there is no way to separate out what is allergy/MCAS vs. some other disease process. Totally makes sense to me. So, he feels we need to be aggressive at this point about addressing the allergies. He wants to put me on Xolair shots (we have to get the insurance prequalification so that's another issue we are starting to work through today). Even though I am not asthmatic, he said he has a few other patients without asthma that have been helped. He said it will also help us sort out what is classical allergy vs. MCAS reactivity. So, has anyone else used this treatment? Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted September 19, 2012 Report Share Posted September 19, 2012 I haven't tried it but have heard some of the mast cell docs have prescribed it to their patients with mast cell disease and high IgE. I presume you've already tried eliminating as many enviro triggers as possible and doing a strict elimintation diet low histamine, or organic preservative free, and eliminating all mandatory meds. Have you maxed out on H1, H2s and mast cell stabilizers and tried all the options?What doses are you on?If so Xolair might be reasonable. Hopefully you'll find some people who've been on it. It has more possible risks than the other meds which is why it's usually reserved until all else has failed from what I've heard. A lot of the mast cell docs don't seem to recommend allergy shots as we're so reactive they can make us worse and don't really help unless they're given for life...I hope they find something to help you! Quote Link to comment Share on other sites More sharing options...
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