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Chronic Idiopathic Urticaria Community
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Avatar universal

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

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.  
139 Responses
Avatar universal
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.
1 Comments
I started Xolair 9 months ago and haven't had a hive since.
Avatar universal
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!
1355118 tn?1298564879
MEDICAL PROFESSIONAL
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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 !!!!
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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!!
Avatar universal
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.
Avatar universal
I've been suffering for two years with chronic urticaria.  It started on my 40th birthday.  I am pretty convinced that it is some sort of hormonal imbalance.  I too have tried all of the different treatment options.  Prednisone is one drug that I only want to take as a last resort.  I tried continuous birth control for about 6 months with no changes in the hives. Some of the medications include: Benedryl, Hydroxychloroquine, Singular, Fexofenadine, Ranitidine, Xyzal, Hydroxyzine, Alprazolam, Dapsone, Zyrtec.  
I just got my 1st two shots of the Xolair yesterday.  I hope and pray that this helps.  I had a good day today.
Avatar universal
I too have had tremendous success with this drug.  I've had autoimmune urticaria and angeodema for about 16 years now.  No drug or combination of drugs has helped.  I was able to participate in a trial of Xolair and it was evident within one day that the drug was a life saver!  Unfortunately, insurance won't cover it and it's well over $1000 for the dosage I need.  I'm really hoping the FDA approves this drug for this use very soon.  
Avatar universal
I have suffered with chronic idiopathic uticaria myself for 9 years.  My nightmare started when I went in for an induction to have my daughter. I ended up needing a c-section and by that night I was covered head to toe and I had edema so bad and throat closing up.  I have had them daily ever since.  Predinisone was the only thing that made the itching subside and the swelling for short periods of time.  I suffered with the hives still taking the predinisone, along with osteopenia, raised blood pressure, elevated pulse rate, mood swings, weight gain, and joint pain to where some days I couldn't walk.  I went through the loop of specialists and many drug therapies.  With no success I might add!  The top specialist at the University didn't know what to do with me and decided to send me to All Children's in St Pete, FL.  I see an allergy/immunology specialist and she was the one who finally recommended me to start the Xolair.  My IGE levels were high enough for my insurance to cover it, since it is an asthma allergy induced medication.  I still have to battle with the insurance once in a while because I never have had problems with asthma even though tests show that I have it.  My hives were gone 4 days after I started the Xolair and I was able to wean off the prednisone.  I was going every 2 weeks and now I am able to hold off for 3 weeks.  Towards the beginning of the 3rd week I start to notice some hives and have to be careful of my activities, or else I will have severe swelling.  I too am hoping that it is approved for chronic uticaria so that we can stop the struggle with insurance companies.  The medicine is so expensive and no one could afford the injections without insurance.  I only hope I can find the cause of the problem so that I don't have to depend on getting these injections for the rest of my life!  I am relieved that I am not alone in this battle and it is nice to hear everyone's experience and possible answers to this horrible curse!
535822 tn?1443976780
I think that there is a correlation with having a trauma or shock this happened to me after a dental procedure went wrong about 3 years ago..I like you good folks have treid everything.. I break out at the drop of a hat, I have learned to live with it, I put some cream on if it itches and burns, I have found a cold cloth helpful I don't take any more of the drugs I think they make it worse at times I also get dermographism ..
Avatar universal
Just call the General Hospital in Boston,MA. I am from Michigan but I have never found a medical facility that states they specialize in Chronic Urticaria or Angioedma unitl I found this hospital.  I called them because I don't want to travel if they are no different than anyother facility.  They talked to me about xolair injections.  Then I found this site and started reading about all of your experiences with xolair.  Does anyone know of any doctor that give the injection in Michigan or a surronding state?
Avatar universal
My suggestion is that you contact Novartis and find out which doctors in your area use Xolair. They maintain a list. If they use it for Asthma and are comfortable with it's administration, they may try it with you.  That is how I found my doctor in New York City.

Another suggestion would be to try to find out whether there are stage III studies for Xolair done in your area.  You can find this out by going on clinical trials. gov.

Hope this helps you.
Avatar universal
I have experienced hives and every day for the last 4 years and have tried every H1 and H2 blockers along with quinine and a host of other treatments. About every 4 months, I would have an acute attack of swelling that would require an emergency visit to the doctor for a steroid shot followed by a dose pack to relive the swelling.

My allergist got me into a Xolair injection study in May and within 2 hours of my first injection the hives disappeared. I had my 3rd injection today and continue to be hive/swelling free. I feel like I've been given a new lease on life.

The study is a double-blind study with a random placebo, but based on my results, I feel certain I'm getting the good stuff and it works. Now the challenge will be to get my insurance company to pay for the drug after the study ends.  I've been told the drug company has been very successful at getting this approved and if not, they have donated the drug to patients who benefited from the study.

I would recommend this therapy to anyone who's been through all the traditional therapies without relief.

Good luck!
Avatar universal
Thank you for sharing your story on Xolair. The concern I have had about Xolair is the potential for anaphylaxis to occur. This was pointed out by my wife's immunologist as a reported result of injections, Anaphylaxis, an acute auto-immune respones, can occur immediately or can be delayed. My wife has seen me have anaphylaxis in response to eating a piece of mango and I think that has made her wary. Unfortunately, as of now, our immunologist has not been given approval to do a study with this drug and hives. He has a study with it for asthma but my wife doesn't have asthma. At $750 per injection when you are not part of a study that's quite a price to pay for uncertain outcomes or experiencing an allergic reaction.
Avatar universal
I recived my paper work today to do the study i'm reading  everything.. I myself as had this problem for almost 12 years my lip swells my tongue I get rash all over my body now I'm even getting them on my forhead knots.. I was like enoung is enough so I start the shot for xolair in three weeks with blood work every 2 week. try to find a study in your area call all your allergydoctor to see if they are doing any studys. good luck to you all because I need it right now
Avatar universal
I have chronic idiopathic urticaria from 7 years. On Xolair from 5 years. During treatment I had child, completely healthy. Xolair for me is blessing, I can live normal. But cost me fortune, as in Europe I have to pay full price :(
Avatar universal
I just completed my Xolair study.  I've been hive free for 6 months.  I will not be able to continue the treatments.  My insurance has denied the injections.  My hives have returned in full force.  I am so miserable.  I know the cure, but will have to suffer with this condition.  Please let me know if anyone has been able to get the Xolair injections covered.
Avatar universal
I have had hives for about 15 months now and I have gotten no relief from them. I was at the doctor last week and she suggested I have lab work done to see if I am eligible for the Xolair. After reading these posts, I really hope I am. I am 28 and I have had a hard time dealing with this condition.
I am a patient at Cleveland Clinic, I am not sure how far that is from you! Good luck...
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