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Anyone had experience with Xolair for the treatment of chronic autoimmune urticaria?
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by lenrosen, May 21, 2010
My wife has been experiencing an outbreak of chronic hives for almost 2 years. It started after she broke some bones in her foot and in using crutches she got a pressure hive outbreak. We have tried controlling with H-1 antihistamines. They exacerbate her condition rather than control it. We recently tried hydroxychloroquine with adverse side affects. We have tried L-thyroxin treatment as well but the hives did not go into remission. These are delayed pressure hives and the outbreaks resolve and return with regularity depending on clothing, sitting on hard benches, wearing closely confining clothes and shoes, etc. We are now looking at a very expensive therapy, Xolair (Omalizumab) injections at $750 a pop. Before taking the plunge I am seeking personal experiences with this ************** for autoimmune urticaria so that we can make a more informed decision. I have read a number of studies and understand that immediate and delayed anaphylaxis has occurred on rare occasion in clinical trials. Any stories would be helpful to know.  
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by BrennieR, Sep 22, 2010
Did your wife ever take xolair for her urticaria?  My 20 year old daughter has severe chronic autoimmune urticaria.  Her physicians have started working with our insurance company to try to get her approved for xolair.  They are telling us several thousand per injection twice monthly.  I'm interested to see if anyone is getting positive results from this.
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by wyman4, Oct 10, 2010
My husband was on Xolair injections for 6 months. He has had great success with it! It is very expensive but was worth it! He has had very bad urticaria for 9 years. Has been on everything including 5 years of Cyclosporine. After having two bouts of Renal failure we had to find something different. He felt great on Xolair, very few if any side effects. He went off the injections 90 days ago hoping he would never have to take another one. Sadly we are in the process of trying to get approval to resume the X injections. We felt it was a true blessing and hoping that he will have the same sucess with the second round.Good luck to you!
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by Dr RajputBlank, Oct 11, 2010
Hi, welcome to the forum, such reaction is rare but can occur and is reported. Such reactions usually occur within 2 hours of administration, but may occur up to 24 hours and in some cases more than one year after initiation of regular treatment. Patients should receive treatment only under direct medical supervision and be observed for a minimum of 2 hours following administration; appropriate medications for the treatment of anaphylactic reactions should be available. Hypersensitivity reactions may occur following any dose, even during prolonged therapy; discontinue therapy following any severe reaction. The dosing and frequency depends on the IgE levels. I suggest you to consult your physician for further information.
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by dasmamma, Nov 30, 2010
I have had chronic urticaria and angioedema for 11+ years now. I was on Xolair for a short time years ago before my insurance cut me off. I didn't have any side effects- except injection site discomfort. I was totally clear of all my hives and swelling. I was able to return to all my favorite things without swelling. I also have the delay pressure type. Now I have been steroid dependant again and am really getting tired of this lifestyle. All the side effects of Prednisone  without control of any of my symptoms.
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by russellb, Feb 08, 2011
I was suffering from idiopathic urticaria that was sometimes triggered after pressure, but not always.  Tried all the antihistamines which did nothing.  Had a little success with Zyflo combined with Predisones, but would still get bad flares and had to deal with all the side effects of the steroids.  By pure chance in early 2009 I cam across a dr who was aware of the testing Genetech was doing to get Zolair approved for Urticaria.  With some convincing, he was able to get my insurance company to cover it, and since the first shot, my hives went away almost completely within a few days.  It was like a crazy miracle cure which I didn't think was possible after dealing with this for so long.  So yes, I would recommend anyone out there see if they can try Zolair for hives that seems to have an autoimmune component.
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by dasmamma, Feb 09, 2011
lenrosen- what insurance company do u have? i've battled with mine for years without avail. i'd be willing to pay out of pocket for that insurance if they would cover it. it worked wonders for me also- I so need it back !!!!
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by csally, Feb 11, 2011
I too am battling chronic idiopathic urticaria for several years.  I was placed on Cyclosporin, many different types of antihistamines and now, Prednisone.  I am anxious to get off Prednisone and to try Xolair.  I am having difficulty finding a doctor, here on the east coast, who will administer the medication.  You found a gem - a physician who not only administers the medication but who was successful in obtaining insurance coverage for you.  Would you share this information with me?  I think the more people who obtain insurance coverage, the more likely it will be a standard protocol.  Thanks for your help;  I really appreciate it.
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by JHWmommy, Mar 04, 2011
My doctor at VCU health systems in Richmond, VA going to be part of a trial for Xolair starting in April that I am hoping to be a part of. If you are anywhere close by you should give him a call, Dr. Schwartz in allergy.
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by JHWmommy, Mar 04, 2011
Oops, new here! Meant for the last post to go to you.

My doctor at VCU health systems in Richmond, VA going to be part of a trial for Xolair starting in April that I am hoping to be a part of. If you are anywhere close by you should give him a call, Dr. Schwartz in allergy.