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.  

[Wonderingwendy444]

After 8 mo of non-stop painful and disfiguring hives and angioedema, my physician husband searched for a solution in medical databases and conferred with colleagues in a  large university with multiple residency programs.  The data and opinions offered two viable options:  Dapsone and Xolair.  I reviewed the lists of potential side effects and chose Xolair.  Fortunately my insurance covered the cost but I would have done it at my own cost, I was desperate for relief.   I began monthly injections one year ago.  After the first week I saw improvement. After two weeks the hives and facial swelling were gone.  By six months I felt comfortable delaying injections and it has now been nearly three months since last injection with no recurrence.   I count Xolair (and my husband) among my life's many blessings.  

[lenrosen]

My wife has now had 3 injections. The first took a few days to take effect and saw a rapid reduction in the onset of hives. When hives did erupt they disappeared quickly and were not as irritating. She could wear tighter fitting clothes. We could hug. The effects wore off after about 11 weeks and she had a second injection. This time she developed red itchiness for the first 2 weeks and then the hives subsided and she had relief from them for about 10 weeks. She had a third injection over 8 weeks ago. She gets hives but they go away quickly and are not as irritating as before. In the last week there have been more incidents so I suspect she will soon need another shot. We are trying to space these out not just because of cost, but also because we have travel plans next February and don't want the hives interrupting our Florida plans.

I thank all of you for contributing to the discussion about Xolair and its effectiveness. I'm not sorry we have invested in the shots at over $700 per injection. I am surprised that the company has not openly stated that this is more than just a drug for combating asthma and that the drug is not part of the formulary of approved drugs for acute idiopathic urticaria. This is an injustice to those who suffer from the condition.

Len

[apackard]

I saw your post and I wanted to get more information from you. My mom has been suffering for over a year now with CIU. We live in the Tampa area and have been looking for local doctors that treat with this medication for CIU. The doctor she is currently seeing will not look into other options other than her taking Prednisone. This has caused her to be very sick and I'm looking at all other options that are available. I saw that you said you were in St Pete and I wanted to see who the Dr was that you saw.
Thank you in advance for any help that you can give me.

[NancyBza]

Hello, I am another sufferer of this condition.  I tried xolair for the first time 1 month ago, and 2 weeks ago finally got the relief I've been praying for.  My insurance company is SunLife financial in Canada and they cover 150mg 1x month under my plan.  Good luck!

[Lidabid]

So good to hear about you successful birth. I got hives after stopping the generic form of yaz birth control. Did you continue shots while getting pregnant and through pregnancy?  Did you receive shots while breast feeding?  Thanks so much for your help!

[CraigsGirl]

Hi,
What is the name of the Facebook group you mentioned?  I can't find it.
Thanks!