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Xolair for mitigating anaphylaxis

So I've been allergic to milk protein for my entire life. I've had anaphylactic reactions my entire life probably upwards of 50. I generally administer my own epi and then get to the ED for more epi/meds a few hours of monitoring for a biphasic reaction. I've been through it all: intubation, bipap, a record of 5 epi's to stop a reaction, mag, steroids and all the H1 and H2 blockers imaginable. Just in the last half year I've been hospitalized 5 times and none of them were my mistake. I'm very good a doing whats necessary to stay alive and my reaction to the milk is so severe that it only takes a good 5-10 seconds to know – not uncommon but still.

So all the stops have been taken out on how to treat me for intervention and then non-medical related prevention. Very recently though my Allergist and I decided to take a shot in the dark to see if Xolair might be useful for mitigating (in any way) the most severe of the anaphylactic symptoms. My IgE level is 61 IU/ml. So I definitely meet criteria. It's going to be **** trying to get the insurance to cover it but we're going to try.

Has anyone had experience in using Xolair for severe food allergy? 

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  • Kathy P

    Wow mrklove, sounds like you have really severe and quick reactions. It's so scary when you do everything right and wind up being exposed to your allergens. Definitely BTDT but fortunately mine are not as severe.I know there are people on Xolair for idiopathic anaphylaxis. Have you started the insurance process yet? What is your next step?

  • mrklove
    Kathy P posted:
    Wow mrklove, sounds like you have really severe and quick reactions. It's so scary when you do everything right and wind up being exposed to your allergens. Definitely BTDT but fortunately mine are not as severe.I know there are people on Xolair for idiopathic anaphylaxis. Have you started the insurance process yet? What is your next step?

    I started the insurance process with my doc and we're thinking a weeks time for them to get back with the inevitable denial but we've got a plan to make a hard case for coverage. 

    I did actually read some of the idiopathic anaphylaxis write up's via a simple google search. I remain hopeful that it may help me but pessimistic that like most healthcare choices in the US it will boil down to me not getting a chance because some executive can't profit off of it.

  • K8sMom2002

    Oh, gracious, that sounds extremely tough and scary and stressful. I believe @Anne P's DD has food allergies and asthma, and she just started on Xolair. Hoping she'll be able to chime in and give you her perspective.

    Do you have asthma as well? Are you allergic to all forms of milk, or do you tolerate baked milk? I'm assuming that you don't, but just thought I would ask. 

    I'm curious about how you manage your food allergies as an adult, since my own DD is 16 with a corn allergy. We are trying to help her get prepared for life in college and beyond, and she's doing great … but it's always helpful to get tips and tricks from people who have been there and done that.

    While you're waiting on the insurance approval process, we're here for you and we'll definitely cheer you on!

  • mrklove

    Cynthia,

    Yes I have asthma. I’ve had it since childhood where it is was not well controlled. I used to take four nebulizer treatments a day and was on most of the new corticosteroids as they came out. In high school I pressed myself to run track and slowly built up respiratory strength. Then with Advair and a combo of exercise I was able to bring it under control and it’s stayed that way.  My asthma triggers were always related to my allergies. As a child it was animal dander, milk and shellfish all of which I had several anaphylactic reactions to. In my teenage years I outgrew the dander allergies through allergy shots and then about 6 years ago I outgrew the shellfish allergy. Milk however maintains its severity. 

    Maintaining my own safety in a world where I’m exposed to milk several dozen times a day is something of a habit I learned when I was your daughters age. I would go to the store and read he labels of food. Any food that was new I’d try slowly. I spent money on a nice but packable emergency kit which includes: epi pens, liquid Benadryl, ranitidine, prednisone, alcohol and wipes and my doctors business cards. I bring this kit everywhere, no matter where I go. If the epi is not within a minute from you in proximity it could mean death. I spent a great deal of time learning about the cellular biology surrounding reactions. Also learning of dairy substitutes and no matter where I go if I’m concerned I can’t eat something because of cross contamination or uncertainty I just don’t eat until I get something I know I can.

  • K8sMom2002

    MrKLove, you sound SO much like DD — except, thank goodness, she doesn't have reactions as severely and as quickly as you do. The worst reaction she's had only took three epinephrine injections to turn around.

    She's a label reader and has been since she was small, and she carries her epinephrine auto-injectors with her everywhere. She also wears her medical ID bracelet 24/7. 

    I'm hoping that one day (soon!) there will be a cure for food allergies … 

  • Jen

    Hi @mrklove,

    Welcome to posting!  I wish you luck in your quest to get xolair covered by insurance!

  • Anne P

    My daughter has multiple life threatening food allergies and idiopathic anaphylaxis also.  She has been hospitalized multiple times, been in the ICU, needed breathing support, 3 epis, tons of other meds etc.  

    Her allergist suggested we think about Xolair in April.  Insurance approved it in August, and she got her first shot in late August.  She has only had 3 shots, and her allergist told us that it takes 6 months to see if it will work or not.  So far, she has had mild allergy symptoms (systemic itching OR mild lip swelling OR mild chest tightness); but no anaphylaxis, no epis, no ER visits, no hospitalizations.

    We're hoping to do food challenges next year and see if my daughter can regain any foods.

    One cautionary note.  It's a treatment, not a cure.  Xolair only works while you're on it, and allergies will return within 6-12 months of stopping it.  

    Please let us know if your insurance company approves it.

  • mrklove

    Well the hospital pharmacy said no before it could even go to the insurance company. Profits are too important to let a patients needs get in the way. Le sigh.

  • mrklove

    My doc does. I guess because it's not in their formulary and they don't want to pay for it… 

  • Anne P

    That's frustrating.

    My daughter's Xolair is shipped from a special pharmacy to the allergist's office (affiliated with a major medical center).  My allergist's office had to get insurance approval, but it bypasses the hospital pharmacy.  It's delivered to mailroom and routed to the allergy clinic.

    Is there anyway you can request an appeal or a workaround?

  • Melissa G

    @mrklove, were you ever able to get the Xolair covered by your insurance? How have you been doing?