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Experience with Xolair for Autoimmune Urticaria
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Experience with Xolair for Autoimmune Urticaria

Does anyone have any experience using Xolair for Chronic Autoimmune Urticaria.  My 20 year old daughter has a severe case that started about 10 months ago and has been getting progressively worse over the last 4-6 months.  She was completely unresponsive to antihistamines although she continues to take many.  She has been on an immune suppressant called cyclosporine that was working fairly well but had to go off quickly due to bad kidney response.  She is now on cellcept, another immune suppressant, but it is not working well.  They want to start her on xolair and her doctors have started working with our insurance company to try to get it approved.  They are telling us about $6000/month for the 2 shots.
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Avatar_f_tn
What is her IgE level?  That is the key issue.  It has to be high to qualify for Xolair.  Seeking aproval for 2 shots would indicate that it is quite high.

It is my understanding that Xolair is only aproved for severe allergic asthma in the United States.  However, it should be very helpful in any IgE mediated allergic response.  I think she should find it quite beneficial if her uticaria is IgE mediated (high IgE level).   I hope her doctors are successful in convincing her insurance to cover it.  

Discus funding options with her doctors.  Nevartis (manufacturer) has a program called Access Solutions that will help with the financial aid process.  They help with the co-pays for the medicine and the office visit.  There are new FDA regulations requiring a clinician exam prior to adminstration of the shots.  I am getting my first shot under the new regs today.  

I pray that things go well for your daughter and that the medicine works for her.  I have found it very beneficial.
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Avatar_f_tn
Hi, I suffer from Aquagenic Urticuria, and me too tried Cyclosporine and had to stop, and now trying another med, but I never heard of Xolair, What kind of urticuria does she has??? Me its all about the water, its like Im allergic to water, but I can drink it...and now they are thinking of giving me IVIG treatment so Im going to wait to see if the meds Im taking now are going to work :S
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Avatar_f_tn
Thanks for your comments.  I've heard of aquagenic urticaria.  Her urticaris chronic autoimmune, which basically means that her immume system is attacking the mast cells in her skin.  Those are the ones that produce histamines so she produces way too many histamines, hence the red dots, hives and itching.  I don't know her IgE levels but I'm guessing they're high if they're looking at 2 xolair shots per month.  Xolair is given is 3 doses at each shot, and they haven't told her what dose they are recommending at this point.  This is an off-label use for xolair which is actually an asthma drug.  It works by capturing IgE cells so if your urticaria is caused by IgE they feel this will help.  Her rashes are exacerbated by stress and heat but not water which was ruled out early on.  She has other immune system problems (Hashimoto's Thyroiditis, Raynaud's Phenomenon, joint pain) and are still considering a diagnosis of Lupus.

Unfortunately, she is still covered on our insurance and we are outside the income limit for aid from the company to assist with the cost of the drug so insurance is our only hope.
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Avatar_f_tn
I hope that she will be covered for having the med, where do you live???? I have insurance me and it pays 80% of my meds, thank god because the Cyclosporin was expensive :S and if its autoimmune why not try like IVIG, I saw an allergist last week and she want me on that and she told me its better for me because I tried Prednisone and it was better but I can be on that all my life so she say that IVIG have less sides effects...so Im willing to try it.....
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Avatar_f_tn
I figured that Xolair would be an off lable treatment for any allergic reaction.  I have read about people with severe eczema that I thought would greatly benefit from it.  Getting the insurance to cough up any amount of coverage for it will be the trick since it is off lable.  Ask about The Health Well Foundation.  They help with my Xolair for asthma.  My insurance's pharmacy didn't work with the Novartis program, but the foundation picks up 100% of my medicine co-pay.  I still have to pay the doctor's part.  

Her IgE has to be very high to be considering 3 shots twice a month.  I am on the lowest dose which is 2 shots once a month, but since I have gotten rid of an infection, I can really tell that the Xolair is helping me.  

Good luck getting her covered.  No one can afford $6000 a month of one medicine.  It sounds like it will be very beneficial for her though.  
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Avatar_f_tn
Do you know how I can contact the Health Well Foundation?  I keep getting an error when I attempt to access their website.
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Avatar_f_tn
I went to the website and its working, try it again ;)
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Avatar_f_tn
Thanks for the info on Health Well.  They do not currently cover her autoimmune disorder.
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Avatar_f_tn
I have read all the comments regarding drug Xolair  (Omalizumab).

I would be very suprised if this drug would have any effect since urticaria is a well documented side effect of this drug.

I have been given 150mgs of Xolair every 4 weeks for the past 4 years which controls my severe ellergic asthma.   The main side effect I get is urticaria which flares up about 3 days after the injection.  It normally lasts about a week but I now take certirizine (antihistamine)  during this period which reduces it by about 75%.  Before I was able to start this drug I had to undergo 2 extended trials of 9 months each before I met the criteria  In the UK very few patients meet the strict criteria since.  This drug is not with out side effects since I am in contact with another person who has same medication.  We both experience muscle and joint pain and brief spells of extreme fatigue.

IgE is the critical factor and it may be you might only need the lower dose just once a month.  The cost in the UK is £250 per 150mgs and in Spain 420 Euros.  In the Uk this drug can only be given in a hospital and I always have to wait at least an hour after the injection since it has an ongoing risk of anaphalaxis.  The drug also has to be premixed in a special machine before administration.   In the UK this drug cannot be administered by any doctor out side of a specialist hospital.  I spend winter months in Spain and I am able to buy this drug over the counter with a prescription but I take a special mixer with me.    I hope this is useful information and please contact me again and let me know how you get on    
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Avatar_n_tn
My young son was miraculously approved for one vial of Xolair per month for chronic urticaria he's had for three years, unresponsive to any other drug including cyclosporine.

Its been a miracle drug so far!   He's had three injections and has been hive-free since the day after the first one.     There is a chronic urticaria Yahoo group that will be very helpful for any of you with chronic hives...I am over on that list as well for my son.
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Avatar_n_tn
Yes, Xolair is proven to work in several clinical studies for autoimmune urticaria.  I have had CAU for 17 years.  I participated in a study in 2007 for Xolair.  It put my CAU in complete remission.
FYI Regarding Novartis' program for financial assistance, one is only eligible if you do NOT have insurance coverage.  I have health insurance, so their program was not able to help in my case.
What needs to happen is for Novartis/Genentech to forward the case studies to the FDA for approval!!!  I was told that this would be done after the study in which I participated was over.  It has not been submitted yet to the FDA!!!  When it is submitted, the FDA makes a decision within one year.  If they approve it, then the insurance companies can then in turn approve coverage for those of us with CAU.
Honestly, I don't know what in the world is holding up their submittal.
WARNING - I was on cyclosporine for 6 months in the year before the study.  When I came off of it, I was sick to my stomach every day for two years.  I now have three food intolerances, one of which is in EVERYTHING.  This medicine ruined my ability to process certain foods, and I now have to follow a very special, strict, and EXPENSIVE diet.  As if the CAU weren't enough!
Good luck
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Avatar_n_tn
I am also in my twenties and being treated with Xolair for Chronic Idiopathic Uriticaria, and like some of the others mentioned here, it has been like a miracle cure.  I was on a wide variety of antihistamines which had no effect, and was forced to go on a semi-permanent regime of prednisone in order to get some relief.  After visits to multiple doctors in multiple states with no sucess, I by chance spoke to a doctor who mentioned the Xolair trials and was able to help me get my insurance to approve it.  Since the very first shot my hives went away pretty much completely.  I've been on the medicine for nearly 2 years, (one shot in each arm once a month) and have been able to get off all the other medications.  I hope it works out as well for you daughter as it has for me!
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Avatar_n_tn
How on earth was your doctor able to get approval from the health insurance company? I too have chronic ideopathic urticaria and have been treated with all of the usual medications.  Now I am on Prednisone and am anxious to ditch this medication in favor of Xolair.  Many of the doctors I have seen are concerned about the medical legal implications of the drug and are reluctant to prescribe it.  I am considering going out of state or out of the country to obtain this medication because of the cost.  Can you share information on your doctor and how he was able to get approval from the insurance company.  Thank you so much for your help.
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Avatar_f_tn
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!!
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I have been diagnosed with autoimmune urticaria.  The throat swelling is the most concerning.  I'm taking Allegra, Ranitinidine, Zyrtec and Bendryl (as needed).  To the person who commented on eating a mango and having a reaction, mine has clearly been driven by things I put on or in my body.  This includes makeup, lotions, shampoos and toothpase.  I brush my teeth now with a very light amount of toothpaste (Biotine) and then "swish" with a little bit of liquid Benadryl to minimize the reactions.  All of the doctor's tell me that the food and products shouldn't impact me but I know for certain those things impact me.  I've gotten down to eating just beef and drinking water.  I've lost close to 30 lbs and it's very frustrating.  My life changed overnight.  I can remember the day when this came on.  The doctor's tell me it's not stress related but I was going through a lot of stressful events in my life at the time and I'm convinced it's a combination of my stress level and hormones. My doctor wants me to consider Xolair but I'm terrified of having an allergic reaction.
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Avatar_m_tn
Hello, I've had CAU for about two years. Once my first outbreak was confirmed to be CAU, I went on Cylosporine for 6 months. Cleared it up once I helped with a cortizone shot (which always works short term). 9 months after stopping Cylo, CAU came back. 6 more months of Cylo. Now three months after second 6 month cycle, CAU is back. :( I just got approved for off lable use of Xolair. I guess I'll need to start...
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Avatar_m_tn
I also took Xolair for te pass 11 months. I was on a trial study and then the last month took at least 350mg of Xolair. I now have occasional swollen throat, eyes, ears, and lips, it happens after my shot. It does not happen daily but at least once or twice after my dose. . This swelling has happened a little to often for me. I also have anxiety attacks and panic attacks. This happens if I get overheated or warm. This has made me afraid to take the Xolair again. I think I am going to change my diet and see what happens.
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Avatar_f_tn
I am also on Xolair. I talked to my allergist, and he says that your IGE levels do not have to necessarily be high. Mine aren't high, but he says that I need it. I am on a group of medications for asthma and allergies. He also says that taking antibiotics interferes with the Xolair. Meaning, not to take antibotics at all. I was taking minocycline, and once I stopped taking this, after a month the Xolair started working. A small  amount of people will find that Xolair will not work for them at all. It is definitely worth the money. I'm sure because there are a lot of users of this out there, that the price surely has to come down.
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Avatar_m_tn
An update; I've now been on Xolair for 9 mths. In short, I am hive free! Complete remission. It took three months to finally clear everything up. I would take about 5mg of Prednisone daily to help. Occasionally I would take 40mg for a big flair up. After ~3 months, I was able to get completely off Prednisone. Now I just take Xolair (2 shots, once/mth) and Alegra (180mg daily).

I'm going to start the process of coming off Xolair. I hope my AUC is now in my past. Wish me luck.
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Avatar_m_tn
I just got my 1st shot 2 days ago, after getting it, i woke up next day with a small flair up on my thighs, so i took 10 mg of prednisone and woke up this morning clear, was wondering how many days did it take for you to see improvement?  thank you for your time..
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Avatar_m_tn
I started to see improvement after the first day but I wasn't in control. It took about 6 weeks to really see a big improvement. I believe this is also what people experienced in the recent clinical trial to use Xolair to treat AIU.

Good news is Xolair is now FDA approved to treat autoimmune so hopefully the constant fighting with my insurance company to get coverage is over.

New release on approval: http://tinyurl.com/mhwrmoz
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