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.  

[BrennieR]

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.

[wyman4]

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!

[Dr Rajput]

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.

[dasmamma]

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.

[russellb]

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.

[dasmamma]

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 !!!!

[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.

[MWyatt42]

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.

[synergy_ut]

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.  

[moneqec28]

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!

[margypops]

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 ..

[scratchnsniff]

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?

[csally]

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.

[cpartx2]

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!

[lenrosen]

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.

[goodluck0301]

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

[olinit]

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 :(

[MWyatt42]

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.

[Juelz0528]

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...

[ChitChatNine]

Interesting thread brought back up.

[karena423]

Has anyone used Xolair for chronic angioedema only? I have battled this for the last 11 years. My eyes and lips swell every 4-6 weeks. I have never experienced Urticaria. My allergist alerted me yesterday that Xolair could be the medicine I am looking for. Anyone know when it is schedule to be FDA approved? In the next three months?

[lenrosen]

I believe Xolair is FDA approved as an injectible treatment for asthma. Clinical trials for treatment of chronic idiopathic urticaria are happening in a few medical centres in the United States and Europe. I am surprised that your allergist would not be able to provide you with information on its availability and FDA status.

[mako626]

I had my first outbreak with autoimmune uticaria when I was 41. Around this time I was also diagnosed with other autoimmune diseases, such as Grave's disease and Celiac. I have to say, after suffering for the past 7 years, the CAU is by far the worst of these diseases to deal with. This Spring, after years of trying steroids, antihistamines, and Immunoglobulin theragpy, etc. I was finally enrolled in a xoylair study. The results have been amazing!! I no longer have to think of what clothes or shoes I need to wear ( so that I can be more comfortable later in the day when I get my breakouts), I can exercise, I can go to the beach and wear a bathing suit, I can even be tired the next day or endure stressful situations and still not have any breakouts. Xoylair has given me my life back!! It's almost as if I never had hives at all. I still have some itching, but I never get any outbreaks. I'm heartbroken to know that my study is soon coming to an end – my last shot is next week. I don't even know how to get approval for another shot of xoylair, let alone worrying about paying for it. My Dr. said it's extremely hard to get approval through any insurance co. in Mass. Even getting the drug as an asthma patient is difficult enough (which is the ONE THING I DON'T HAVE!!!)
Has anyone here who's been in a study ever tried direct communication with someone @ Genetech??? My Dr. said that sometimes they'll let a patient stay on xoylair if they've had amazing results from it?? I'd like to get the name of someone at Genetech who oversees these studies...may be they could help?

[MWyatt42]

I too was in a Xolair trial that was very successful.  I had my normal life back for 6 months.  After the trial, the hives came back in full force.  I contacted "Genentech Access Foundations."  My doctor completed all of the paperwork and we submitted a request for Xolair again.  I got a call that it was approved this time.  Please don't give up.  Be persistant and talk with Genentech.  There has to be a way to continue the injections.  

[mako626]

Oh God!!! That's so great to hear. My last xoylair shots were in November and the hives have come back in full-force. So far my Dr. hasn't been of any help. I'll contact Genetech immediately!!!!! I pray I can get my life back!!!

[AllergyPA]

Did your wife get tested for allergies?   Did she get blood tests, including eosinophil panel, studies to rule out a serious medical condition and IgE  levels?    See an allergist.  Urticaria could be due to environmental allergies that may respond to Zrytec or another H2 antihistamine in combination with Singulair. If a serious medical condition is ruled out and there are positive allergy tests  immunotherapy is a good treatment.  

[cpartx2]

Good to hear someone has been successful in getting access to Xolair after the study. I had my last 8 weeks ago. Within a month my hives came back and have now become a daily obstacle to life again. I have also experienced an increased frequency of angioedema since the injections ended. In the last 4 weeks, I have had 3 major attacks of angioedema that have resulted in lost work, missed vacation, and a general disruption of life. I received an email today informing me that my 4th and final appeal to Anthem has been denied. My only hope now is the Genentech Foundation.  I'm hopeful they will review my case and provide access to Xolair for me.  After years of suffering and trying every antihistamine/steroid known to modern medicine, Xolair was the only treatment that stopped my symptoms cold.  

Were you successful in gaining insurance coverage or did you gain access from the foundation?

[gigigetter]

I am at the end of my clinical trial as of today, I had 31 weeks of being completely hive-free but after going 11 weeks without the injections the hives did returned and since then I'm back on pred. My doctor began today with the process of seeking insurance approval, he has a 3 step process beginning with me having to retake my IgE level, it has to fall within a certain range for Genetech and the insurance companies, secondly he has a nurse practioner who solely deals with getting insurance approvals, he will write a letter if she fails and then call them if they continue to say no, lastly he'll approach Genetech. He feels that Genetech owes those of us who were willing to be a part of this trial. I really feel that we need our doctors to be willing to fight for us and am glad that mine will.

[cpartx2]

Don't give up on the appeals and if those fail, be sure you get a referral to the Genentech Foundation. I just received a call from them last week and learned I have been accepted as a recipient of Xolair at no charge!  I go back on Xolair this week.  The grant is approved yearly so I will have to repeat the application process again in 2013, but it is worth the effort. I have 3 clinic visits left in my study and they have asked me to stay in until the end even though I'm going back on the therapy this week.  At this point, I'm happy to work with them anytime as long as I have access to the medicine.  Good luck!

[Txdicey]

I am currently in the experimental study for Xolair for chronic idiopathic urticaria.  After 6 years of battling this, it is a relief not to have the hives everyday.  I have high blood pressure and when the hives are present my blood pressure goes up.  With Xolair I have a life again without all of the unsightly sores and rashes.  I am now worried about what I am going to do once the trail is over.  How do I go about getting in touch with the Genentech Foundation so I can continue on my medication?  I know my insurance will not cover for CIU as I work for a Health Insurnance Company and it is still very difficult for people with Asthma to get this medication.  I have looked over Medical Policy Guidelines and those of us with CIU are not being considered, as this is still experimental and investigational.  

[shari53546]

I take the xolair shots, only after being on the study. My insurance would not approve it otherwise.  Mine not only came back full force, but caused my LUpus to come out of remission when I stopped the Xolair.  It was BAD! Now, I am covered 100% by the insurance company, and the hives and swelling are in remission! If you are anywhere in Wisconsin, contact Dr. Olson at the Dean Clinic...HE IS AMAZING, and will get you taken care of!!!!

[Jamesbahama]

Wow.... Its good to know I am not alone. I have been dealing with it for 5 years now.... Started after a wasp sting. The facial outbreaks were the worst. Sometimes my feet swelled so much I could barely walk. I live in The Bahamas and the local doctors here were at a loss to deal with it and the antihistimines were useless after a few days. Then I saw a specialist in Canada who was doing a study and suggested I try Xolair. Like magic the hives went away for up to 90 days at a time. I pay $540 per shot as a co pay. The total cost is $1800. I just got a shot this evening.... Had not had one since September and paid the price with a nasty outbreak last week.

[imsHazz_]

Its so nice to hhear that Xolair works. Im from the Uk and am 16 years old. I developed Chronic Urticaria 6 months ago and have had NO life since. Its restristed me so much with my activites clothes and sleep. I have been on every steriod and anti-hiatiame and all they have done is make it worse and made me gain 2st within 2 months. I am now off steriods and continuing with a tablet called Singular that is licensed for Asthma suffers but also works with Urticaria. This was working for 2 months or so but now the Hives and Swellings have come back in full force. I have now got appoinment with my dodctor at the end of this month and he has mentioned Xolair before but has said it is very hard to get. After readin gthis forum I am determind to try the drug to see if it has the same fantastic results that it has for people on here. I do not know if I can get my parents insurance to pay or not? But i believe over here its cost £3,000 - £15,00 for a year which is ridulios. IM SIXTEEN. anyway, i hope my doctor agrees to let me try to get funding from the NHS for this drug. Fingers crossed cause then maybe I can get my life back.

[momofallergysufferer]

I have an 11-year old daughter who has been diagnosed with chronic idiopathic urticaria.  She is currently on a dose of singular, combined with Levocetirizine and Ranitidine.  For about a week we saw excellent results and no hives, however they have recently come back strong!  Her allergist is now recommending 2 months of cyclosporine.  I've just been reviewing this option and am looking for someone who has had experience using cyclosporine in a child her age.  Was it successful?  What are the long term side effects?

Thanks!

[Jamesbahama]

I so feel for you. Forget Singulair or any other antihistimine, they are a joke. I know exactly what youre dealing with. You need Xolair. It saved me and will be the best thing for you. One shot can last we more than 8 weeks. Maybe ypu can get it from Genentec is US? good luck...

[Jamesbahama]

I am not a doctor but Xolair saved me and may be the right remedy for your daughter. Only thing that worked. Antihistimines are a band-aid effect at best.

[Sobigeokar]

I have solaire urticaria, and can not stay outside in the sun for more than a few minutes before the sun exposed skin become totally red, itchy and svollen. I´m from Norway and the doctors here really don´t know much about Xolar. I found some information on internet, and hope I can convince my doctors to give it a try.... I don´t know if it´s a problem, but my IgE levels are normal... Is there anyone out there who has had success with Xolar whiteout having high IgE levels??? Please answer me!!

Thank you!

[Sobigeokar]

I have solaire urticaria, and can not stay outside in the sun for more than a few minutes before the sun exposed skin become totally red, itchy and svollen. I´m from Norway and the doctors here really don´t know much about Xolar. I found some information on internet, and hope I can convince my doctors to give it a try.... I don´t know if it´s a problem, but my IgE levels are normal... Is there anyone out there who has had success with Xolar whiteout having high IgE levels??? Please answer me!!

Thank you!

[Txdicey]

I had my last shot of Xolair today in the trial study.   He has worked wonderful. Thanks to this site i have contacted Genetech and have a case number and a case manager to see if they will help me with the cost of the drug. Please contact Access Solutions @ 1 800 704 6610 and let them know what is going on.  See if they will cover Xolair or if you can enter into the trial study.    I honestly feel like we ate just a few years away from having this medicine approved by the FDA and being covered by our insurance.  

[MzB82]

I too have just completed the trial through Genetech. Xolaire had saved my life. I battled with chronic urticaria for over a year before I began the trial. At this time, I was ready to try anything! I sought comfort in knowing the medication is already on the market, just in the works to be approved for chronic hives by the FDA. I felt the effects of the drug immediately. I did experience one bout of rebound angioedema about three months into the study. I believe it was related to some garlic I ate. I have not had a shot in over four weeks. I have not had any hives but I do experience slight anxiety. I am afraid the hives will come back but I have been told the medication "retrains" your complement system not to react so violently. To anyone who can get a hold of the medication, please do. I have discovered itching to be worst than pain. Good luck!

[Txdicey]

My study shots are over and was doing pretty good until last night. Had garlic and shrimp and paid for it dearly.  My entire mouth and tongue were so swollen I did not think I would make it through the night.  Just praying I can get back on the Xolair soon.  Good luck all as I know the pain and depression that comes with thes strange disease.  Have everyone in my prayers

[Txdicey]

So what all did you have to do to get your approval through Genetch. Just got my first denial from my insurance

[Txdicey]

caremark has approved Xolair for cau

[Okilloran]

Hi, I know this an old post, but am curious about the dental procedure.  I started with hives two days after a crown was done.  It is awful!  Let me know if you can share any information.  Thanks!

[hellovietnam]

Hi all.

I live in Singapore and had my first outbreak 12 weeks ago. It came the day after I had been i Europe on a very stressful business trip. I swear- I nearly broke down emotionally that week. After this- I couldn't walk fast, do any kind of exercise, or be in the sun for more than 1 min- then my forehead, arms, back, legs would break out. At the same time, I'd feel a "pressure" on my chest. Well here is the deal- if I'm exited or stressed, I'll get it on my hands and wrist- if hot the other places. So - since everyone are negative about antihistamine, I decided to try some alternative treatment. Went to a homeopathic doctor and have been eating her pills 2 a week now for 5 weeks. I also saw a chinese doctor who is feeding me with the most horrible stuff I've ever tasted. And I'm seeing a hypnotherapist. I don't know WHAT is helping me- but I am 75% better now.The hypnotherapist is to "program me" so I don't   go into some kind of "I am afraid of getting hives, now that I have this meeting" etc. I learn to relax. I TRULY believe my stress was a trigger with this. Maybe my hormones too, since I haven't had my period for 12 weeks as well. I'm 44. I am happy for those who get help with Xolair- but it's not a cure, right? Also - I drink Braggs vinegar everyday (3 times) diluted into water.I take D, zinc, Q 10, C vitamins too. This disease is a hell- we must be strong:)

[polypam]

I live in NE Ohio and I just started going to the Cleveland Clinic in January.  My allergist Dr. Cristine Radojicic is the one who told me about Xolair for chronic hives.  I have not started on this med yet, but she is willing to prescribe if other treatments are not effective.

[cdnangel49]

I am in Canada and am going for shot # 4 of Xolair this week. I cannot say i have had 100% success but compared to the last 8 years of hell, I'll take this! For the most part I will say i am 85% better but am hoping for FDA approval for the use of this drug for chronic urticaria so my insurance will cover it, because at $1400 a month out of my pocket, not sure how long I can stay on it.

[cdnangel49]

I am in Canada and am going for shot # 4 of Xolair this week. I cannot say i have had 100% success but compared to the last 8 years of hell, I'll take this! For the most part I will say i am 85% better but am hoping for FDA approval for the use of this drug for chronic urticaria so my insurance will cover it, because at $1400 a month out of my pocket, not sure how long I can stay on it.

[Txdicey]

I just got a call from my doctors office.  I just got my approval for Xolair from Genetech to cover my medicine for CIAU.  I have to finish my study and should get my first treatment in September.   The medicine is already at the doctors office.  If anyone needs help please email me at Diane_eilers***@****. I will be glad to share any information. I just want to thank God and all the people who prayed for me for this miracle to happen.  

[lenrosen]

We are well past the 4th anniversary of my wife developing delayed pressure urticaria. The hives remain a chronic problem although she soldiers on through bouts of them. She gets them when we vacation if waves break against her legs while wading in the ocean. She gets them if she sits in a wet bathing suit after swimming. She gets them if she leans against a hard back of a chair, or puts her arm on an armrest. They come a few hours after the activity and last for 24 to 48 hours before vanishing. We had our annual revisit with the immunologist here in Toronto. He has had no previous patients treated with Xolair for delayed-pressure hives but is willing to try it with my wife if she is game. After 4 years of this chronic and often painful experience she is prepared to be a guinea pig. So we have enrolled in the process and let's see what ensues.  

[cg936]

I am a 27 year old female and recently, about 8 months ago, developed chronic idiopathic urticaria and angioedema. I have been to 8 specialists and they can not figure out what is going on. I am in the ER weekly covered in hives and with my hands, feet, face, lungs and tongue swelling despite being on ranitidine, prednisone 20mg, clarinex, benadryl, veramyst, and zyrtec daily. I finally found a doctor at the Lahey Clinic in Boston that is involved in the study on Xolair. He is currently working with my insurance to get this covered, but in the meantime I am continuing to suffer from random attacks. It is good to hear that most of you have had success wtih Xolair as this condition has really immobilized me. Any suggestions on anything else that has worked for these attacks would be greatly appreciated

[ethansnanna]

I also took all those medicines (and more) with no real relief. I moved out of my house to rule out environmental factors, and so on. Thankfully, with a doctor that really advocated for me with the insurance company I am now on Xolair shots, and I have my life back. I struggled with hives for over 7 years. The prednisone caused issues with my diabetes which just put me on more medication. I was fortunate to be in a Xolair study and found it worked miracles for me. I hope you can get it or it becomes prescribed offically for hives with the drug companies soon. Good luck!

[txchris1983]

I’ve been suffering with Chronic Idiopathic Urticaria resulting in anaphylaxis for nearly 14 months now, just a few months after my 46th birthday. I’ve been seen in the ER with anaphylaxis 3 times since this condition began. My allergist placed me on Prednisone, Allegra (Fexofenadine), Flonase (Fluticasone), Zyrtec, Singulair, Zantac, Dapsone and Benedryl. My regiment is a combination of these medications taken every twelve hours. I continue to break out in hives with itching as I near the 12 hour mark each day (and on someday, every 4-6 hours). I’ve tried different combinations of the medications over the months, and it’s clear that only the Prednisone has been successful preventing my outbreaks resulting in anaphylaxis.  Unfortunately, my allergist has not been able to perform full panel allergy testing while I’m on Prednisone (and I experience hive with anaphylaxis when Prednisone is stopped). I’ve been tested for a number of autoimmune diseases and cancers, all of which came back negative. My allergist contacted Genentech and they submitted a special request to my insurance carrier, CINGA for Xolair. CIGNA will not authorize the Rx under my coverage. However, I just learned that their Specialty Pharmacy will provide the medication to me discounted. Only $80 for a 90 day supply (6 injections).  I’m glad and encouraged to find that Xolair has been successful for so many. I will post again after receiving the first injection.

[fibrogal]

hi all,
  I just discovered this site. I know some post regards to Xolair are months, years old.
I so hope someone can help me. My levels were off charts.
I have many different issues.
My pulmonary doc. started me on Xolair in nov. and after few injections I no longer needed my O2 constantly.
  For me that was a miracle. If any of you been on O2 it's not easy.
Now I was on and in the xolair discount card program. Thru caremark who dispenses this med to my docs office.
We lost our good health insurance and I am now covered thru state of Illinois. And yep they denied it.
I am lucky to have my docs rn and a lady at caremark calling them faxing over 40 pages of things my doc has tried. test results.
  They still say no.
I have not have my injection in 6 wks I'm over. And of course I am back on O2. Just the shortest walk or doing things I'm so outta breath.
  I am at wits end, and I know I'm getting worse.
  I don't know what else to do, I will most likely end up very sick again and have to be in hospital. They have been faxed rn notes docs info and letter saying I must have this injection. What the heck are these ppl thinking. It will be more for a hospital room daily.

Any help please let me know...
What I do not get is I have a discount card program that the Xolair company sent me it covers up to 4,000. but the caremark ppl say I have to still have approval from an insurance company.
  please help me
It has been life saver for me and I was Oxygen free for months.
thank you  

[wandaboy]

Hello, wanted to ask if this Xolair injection stops your hives and itching?

[nanwishing]

I suffer from severe hives- unknown cause, but have been on xolair  for over a year.  Hives almost all gone, but curiously come back with a vengence about 2 days before my monthly injection.  BECAUSE I had a history of asthma, my doctor was able to go that route to get me covered by insurance.  Unfortunately, I left public school insurance two months ago and went to private school insurance.  Same company, United, but different plans.  Was FULLY paid for before, now I pay $285 a shot.  I will do whatever I can to keep the shots going!!!

[JayMKash57]

Hi Txdicey,
I am an allergist who has had amazing success using various dosing schedules of Xolair for three of my pts with CIU.
I would love to know how you or your physician was able to obtain Xolair through Genentech without the FDA indications (allergic asthma).
If you wouldn't mind either contacting me via email or calling my office OR, giving your doctor my office number which I will give you through my email address at ***@****.
Any guidance you or your physician can offer will potentially enhance the quality of life for 3 of my pts who I was lucky enough to donate about 18 months of Xolair to. Sadly, we've run out and id like to get these pts back on meds.
Thank you so much,
Jay Michael Kashkin,MD
***@****

[Traci67]

I broke out in hives December of 2011 dr tested me and it came back autoimmune. he basically medicated me and said see you in 6 months. I switched medical groups and my new dr told me of the clinical trial to treat hives using xolair. at first my insurance wasnt going to cover it but because i have asthma and xolair is an asthma medication we used that as a loop hold. I have had 8 injections (costing my insurance co $5,000 each time) and nothing has changed. my GP says she hasnt heard of much success with it. i happen to have stumbled upon something that fixed my problem by accident. while looking for natural treatments for my thyroid (as its my thyroid that is causing the problem but as the dr said something is causing my thyroid to malfunction since im both hypo and hyper at the same time) one article lead to another and i started to read about GMO's  since it was on the ballot. i decided after my reading that i didnt want that in my diet even if removing it didnt solve my problem....i cut all corn and soy out of my diet and within 2 days my hives were gone. 2 months later im now almost off all my meds and have lost 12 or the 30 lbs i gained from the prednisone. my allergist doesnt believe its the diet so is keeping me on xolair until im off all my meds then we are going to see if the diet holds. GMO's are bad stuff and i urge others to look into them being the cause of their health problems. good movie to watch is geneticroulette.

[csally]

I suffer from Chronic Idiopathic Urticaria with no evidence of Asthma,  for the past six years.  I went through the usual compliment of medications in the protocol including Prednisone, until I realized that my only hope was, at least a trial of Xolair.  While I live in NYC, I found it difficult to locate a physician who would administer Xolair since it was not FDA approved. I finally found an allergist who understood this disease and was willing to accept me as a Xolair patient.  The results were truly amazing, with the symptoms of the disease disappearing after two days.  I have now been on the medication for almost two years and have been able to lengthen the interim between injections.  My insurer, United Health Care, refused to cover the medication for this non approved use.  However, with dogged persistence, they were finally forced to pay.  Please feel free to contact me for any help I can provide.  

[What_a_Mess]

Thanks so much for sharing! I've had urticaria and angioedema for 12 years. My hives were always exacerbated by hormonal spikes, and the only helpful treatment has been Lupron. Although it is very effective, it isn't completely effective--I still use antihistamines and Prednisone. I've been on Lupron for 8 years, and I need to search for a better option.

I just heard about Xolair today for the first time and its potential to help Chronic Urticaria. Could you share your doctor's name in NYC? Can you share how you were able to first request trying the injections? Also, have you experienced any side effects? Thanks in advance for any more information you can share.

[karenhughes]

hi there ive had chronic urticaria for 17years tried lots of antihistamines and off label doses of much stronger meds took prednisolone for 13years daily now and developed chronic joint problems fybromyalgia , fatigue, depression noone seems to understand its taken over 15years of my life the hideous hives swellings etc ive stopped going out cant plan anything because you dont know just how hideous youll look each day i feel for you all im currently awaiting xolair will keep you informed in the meantime take care would love to hear how you are doing email me ***@**** xxxx

[karenhughes]

hi there ive had chronic urticaria for 17years tried lots of antihistamines and off label doses of much stronger meds took prednisolone for 13years daily now and developed chronic joint problems fybromyalgia , fatigue, depression noone seems to understand its taken over 15years of my life the hideous hives swellings etc ive stopped going out cant plan anything because you dont know just how hideous youll look each day i feel for you all im currently awaiting xolair will keep you informed in the meantime take care would love to hear how you are doing

[ken32]

Did any of you who have been on  xolair have no response after the first injection but did after the second or third.  I've had chronic hives for years and have been on various prescription and over the the counter antihistamines with no effect on my hives.  Five days ago I had my first injection (300) and it has had no effect on my hives. I'm paying $1400 out of pocket for the treatment and am debating whether to have another two injections. Thank you.

[rjyh13]

I've been on Xolair for almost right years for allergic asthma and have rec'd as an extra perk the great help it has for my chronic urticaria.  Only side effects I've had were headache the first two months and occasional injection site discomfort.   I receive 2 shots every two weeks and if I'm even a few days late the hives come back...the more late I am the worse I get.   It has been a miracle drug for both the allergic asthma and hives.   Very expensive, BCBS  pays $2981/month for my dosage, but luckily they cover it 100% with no copay/deductible.

[rjyh13]

It takes some people several doses up to 6-12 months to notice any difference.   Hopefully it works soon for you.

[lenrosen]

Going on two months now from my wife's first xolair injection. Other than fatigue she is much better. She has had some small hives but they rapidly dissipate. I can hug her now without a major eruption, in fact, without any consequences other than the good kind. If the hives re-emerge we'll definitely spend the money on another injection. It has been exciting to watch how the disappearance of the hives has altered my wife's state of mind and body.

[rere1auntie]

what do you need the zolair for?