Anyone had experience with Xolair for the treatment of chronic autoimmune urticaria?

[lenrosen]

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.  

[csally]

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.

[JHWmommy]

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.

[JHWmommy]

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.

[csally]

Thank you so much for the information.  Genentech is now conducting stage III studies of Xolair at various centers throughout the U.S. and in parts of Europe.  This is encouraging because after the studies are completed and analyzed, they go for approval to the FDA.  If passed, Xolair becomes an approved medication and more likely for the insurance companies to cover the injections.  

There are stipulations however, on who can participate in the study.  I would be eliminated because I am unable to refrain from using antihistamines, Prednisone and Singulair for the month proceeding the injection.  Really, if one has a bad case of hives, how on earth can you stop using medication?

I finally found a doctor who is willing to try Xolair.  I will have to pay for the medication but he will try to convince the insurance to cover it.  It seems this is an art itself - how to deal with the insurance company in getting an off label, non approved drug covered.  Some physicians seem to have found the secret.

Good luck to you.  I hope the medication works.  Be sure to arrange for continuing injections following the study, if Xolair works.  I think you can stipulate this as one of the conditions for your participation.

[mizzdee84]

I just started the treatment last week and the hives went completely away in 2 days and swelling!! Unfortunately I woke up with hives this moring but very minimal compared to outbreaks when I wasn't on Xolair. I have Kaiser and I pay 3 dollars a month for my shot. I am not sure if all other insurance companies are as ok with the cost as Kaiser but I had no problem starting it the day after my Allergist suggested it. I am remaining optimistic that this small outbreak will occur less if any once I continue my monthly injections. I believe me having the flu and being on antibiotics may be contributing to the effectiveness of Xolair at this time so I am still holding out hope this is for me. Since December I had been suffering and I am a 26yr old mom so day to day task were becoming unbearable as well as outings because I would flare up at any given time. Good luck to you all fighting to use this drug because it works!!

[Angie0926]

I have been suffering with chronic autoimmune urticaria for over 6 years and no combination of antihistamines or steroids controlled my symptoms.  I was constantly at the ER with anaphylactic shock and convinced that this would kill me.  After years of tests with every specialist imaginable, I finally found that I am allergic to my own progesterone.  I had a complete hysterectomy in December 2010 and since the surgery I've had no bouts of anaphylactic shock and my hives have significantly improved.  During the course of the 6 years I have developed several autoimmune disorders, the major one being Lupus.  When I have hive outbreaks it is accompanied by severe joint pain and swelling.  I started Xolair infusions 2 months ago and it has helped.  My insurance rejected the treatment for most of last year, but Dr. Ishmael at Hershey Medical Center Department of Immumology wrote many letters and rallied on my behalf until the insurance gave in...finally.  I've noticed that as I creep closer to my infusion date (I treat once monthly) that my hives are more aggressive.  Perhaps it is wearing off?  In any event, I've been able to reduce my prednisone (and subsequent awful side effects) from 100mg to 20mg per day, completely eliminate those drowsy useless antihistamines, my Lupus flares are more controlable, and I've had no anaphylaxis.  I pray this is the answer that I've been searching for and that those of you trying this drug therapy also find success.