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 have been suffering with chronic idiopathic urticaria for the past six years.  I initially went on the usual hierarchies of medication that you mentioned in your e-mail.  I had to stop Cyclosporin when my kidney values changed and found the antihistamines useless for the pain and suffering.  I had a difficult start with Zolair - one physician ordered a number of expensive tests which of course, are useless and then refused to treat me because she was uncomfortable giving a drug that was not FDA approved for the condition.  I did find a highly respected allergist, in NYC who took a chance with me, his first patient with this disease.  Two days later, there was a remarkable improvement.  I continue with the injections which were initially recommended at once a month but have been able to spread them out to one every 7-9 weeks.  We fought with United Health Care, a notoriously difficult insurer and after three internal rejections, they had to send the request to an outside source who approved the request.  The physicians on their staff were not allergists and really had no knowledge of the disease or the medication.  Amazing how an insurer can cloud a picture to add to their bottom line.

In any event, my advice to you is to contact Novartis, as they have a list of physicians who administer Zolair.  No doubt, they would be able to locate someone nearest to you.  Additionally, keep pushing the insurance company, make sure your doctor takes photos to substantiate the complaint and chose someone who is willing to go to bat for you with your insurer.

Best of luck to you all.

[ksj6504]

My husband has been suffering with hives for 11 months now. He is currently taking medrol, cyclosporine, doxepin, Zantac, Zyrtec, and benedryl as needed. He was having some relief but he is a farmer, and when he started picking peanuts, he had another outbreak. We have seen several doctors and have an appointment with Dr. Lawrence Schwartz at VCU in Richmond, VA. Hoping he can help us. If anyone has a doctor that treats this disease on the east coast, we would love to get their names. we are willing to travel if we need to. My husband is interested in taking Xolair but worried about the cost. I just came across a press release on Genentech's website that was posted on 10/10/13 that said the FDA has accepted their application for approval of Xolair for CIU. They should make their decision during the second quarter of 2014. We are hoping it gets approved so that he can get the injections.

[Wonderingwendy444]

Len,
There was a pressure hive component to mine (pressure would cause hives) but hives would also appear with no pressure.  My diagnosis was "Idiopathic Chronic Urticaria".   I hope your wife continues to see improvement.  How wonderful she has you on and by her side.
  ~Wendy

[Selfhealer2121]

I've had hives for about 2 months now and were getting worse. They started about a week or so after after a bug bite. I felt the bug bite triggered an hidden allergy and i was sure the hives were from that. So I set out to find what my body was reacting to. I monitored everything I eat and was careful to notice any reaction. I left out many foods, but I was still breaking out more and more. So as of last thursday 10/10/13 I thought well the only thing left to leave out is milk. I google allergy to milk and there were my symptoms or most of them. So I bought some dairy substitutes and I haven't had any new break outs so far only 2 days though, but I do feel a lot better. So I wait to see. My joints were hurting a lots too as I was mostly breaking out around my elbows and a few around my knees and a lot around my neck but it seems to be easing up now. So all is crossed that I found the source. MILK! Who'd of thought!

I've read all the post and see that most of you are trying that very expensive drug and most have found relief. That's great, but I haven''t read of anyone trying to find the source of the problem. Have any of you tried leaving out a food group to see if you're allergic to it? Allergies can be very sneaky and can hide in a low grade way, then stress, or injuries can bring them out more.
The best of luck and good health to you all.

[She66]

It took five months of xolair before I saw significant changes. First, there were less welts except for break through welts, and angioedema was a problem until the sixth month when I fully appreciated the joy of not waking with welts from scalp to feet. I still have to take 5 mg of prednisone to control angioedema but xolair has given me my life back. I will tell you that many days I feel awful. It could be the massive amounts of antihistamines I take but I think it's a combination of all the treatments. If there is any way you can get xolair, take it! Feeling awful is hundreds of times better than massive hives and swelling. I have Kaiser and through the allergy department I'm paying nothing. It's a battle to get the medical profession to take the hives seriously, and many allergist either don't believe xolair can work or are unable to offer it because of insurance considerations. I don't know what the next  year will bring with Obamacare restrictions, as xolair for hives is off label treatment, but whatever happens and whatever costs, I will use it
until, hopefully, one day I wake and know this hive/angioedema phase of my life is over. Good luck.

[lenrosen]

Although I am not a physician I have been on a similar quest on behalf of my wife. We are not getting the same results as you with Xolair but the drug is definitely improving the situation for my wife after three injections. We are not covered by any health insurance and even so are willing to pay the price even for a modicum of relief from recurring hives. Are yours delayed pressure hives?

Len Rosen