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.  

[tbucci55]

Has anyone tried Hypnotherapy?  I have had Uticaria Dermatographism for 7 years now and have taken everything!  I was on Cyclosporine for a few years and now Xolair for 2 years.  They say something tragic happens in your life to make this condition happen.  It's like a light switch in your body, which I believe is true because I did have something tragic happen to me when this all started.  It would be interesting if hypnotherapy could make it switch back!
Oh and I take a double shot of xolair every month and I would hate to see how bad I would be if I didn't take it.  I still itch uncontrollably every day!  It runs my life.  

[Hipolita]

Hello aren't you concern about the cancer side effect?

[justinsat]

I have a similar story to most others on here.  I have been suffering from CIU for 7 years and the symptoms continually got worse over time. During the 7th year of suffering with this condition I would wake up every day covered in hives.  I would get them from heat, anytime my body was relatively warm, pressure from anything on my skin and possibly stress although it is hard to say if it was stress related.

I have seen several allergists and dermatologist over the 7 years and have tried a large combination of drugs, antihistamine and steroids none of which improved my condition at any point. The only short term relief I would ever get was by sitting in an ice bath, not a cold bath, a bathtub filled with mostly ice and freezing water.  This was brutal but it did help to calm my skin down and I would feel semi normal after my body thawed out  

I finally found long term relief in two forms.  I met with a parasite specialist which slowly but effectively calmed my hives down and then I started taking Xolair.  I live in Canada and my insurance does not cover the Xolair,  it is expensive but it is also worth it.  I would also recommend to anyone with CIU to see a parasite specialist if you are looking for another possible solution or combination of solutions. I had no negative side effects from the Xolair or the combination of parasite medication.  While taking both medications I was 100% hive free for the entire time, almost a year.  I was also hive free for 4 months after I stopped with both medications.

After 4 moths of no medication the hives have now reappeared and are progressively getting worse everyday.  I am scheduled to get a Xolair shot this week and will post again with the results, I am also going in later in the week to see the parasite specialist and will begin taking the medication from her again as well.    

If anyone knows of an insurance company that covers Xolair in Canada please let me know.  I hope the parasite tip and the ice bath can offer some relief to others as well.  

[justinsat]

Yes

[friends5917]

I have been on Xolair for about 8 months at 150 mg. This drug is awesome! I went from debilitating hives to nothing! I have also been on dapsone at the same time. So they are bumping me to 300 in hopes I can get rid  of the dapsone.  I have had this condition for seven years.

[ev99]

I agree, I went to the hospital for a small procedure which involved a small tube in the urethra. Being a man I was stressed like crazy leading up to it. I got CIU 2 months after this so I believe the trauma messed up my system which led to this condition. *****! 9 years and counting...:(