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.  

[Durtica]

hello fellow chronic urticaria sufferers!

after suffering for 6 month with those terrible hives, I just got my second 300mg xolair injection.the first one was 1 month ago and was only 150mg and did help a little but was far from completely controlling them.
Anyway, it's been  7 days since my second shot and it seems this time not only it didn't  help- it actually made my hives 10 times worse! to the point where I'm now covered head to toe:(
In addition to that, I seem to get real strange armpit pains and have a pea sized lump in my armpit which I swear wasn't there a week ago...
I wonder did any of you guys had the same experience with xolair? or did any of you experienced  a worsening of the hives for the first days after the shot and than a sudden improvement?
stiil fighting not to lose hope....

thanks in advance for sharing!
D

[redmango25]

Unfortunately, this is exactly what happened to me! I was on Xolair for 9 months and at first it lessened my hives, however it gave me such bad joint pain that after the 9 months I stopped. I DO NOT recommend Xolair for anyone who is experiencing any joint pain...I now take Humeria and deal with the hives separately. (Which still continue to come and go and leave me in stress.....)

[suitsme]

I have had Urticaria for 3 years and tried all the meds others have tried.  My dermatologist has had me on Cellcept (500 MS daily) which has helped tremendously but my new dermatologist wants me to try Zolair.  I'm having my first injection tomorrow.  I hope I'm not making a mistake switching.  My Uticaria is under the skin which means it isn't visible until I start scratching.  Miserable!!  Has anyone else changed from Cellcept to Zolair?

[catlover0329]

I'm having same experience, was hoping it would work with first shot but after 5 rounds of shots my hives are a little better but not completely gone. I have been taking 300 mg every 2 weeks so it's only been about 2 months. Six months is a long time to wait, let's cross our fingers and hope the shots work!

[catlover0329]

I've had 5 rounds of Xolair shots and although my hives are going away slowly, I still have them and unlike some people can't report that they went away miraculously. Doc upped my dose yesterday from 300 mg to 375 and my stomach has red bumps/hives on it today. I hope the hives just go away and stay away forever. It's discouraging to have any hives the day after my shots.

[GlobeTrekkers]

Reading these posts tells me that I am very lucky compared to most folks here. I have had CIU for about 7-8 years bot only get 2-4 attacks per year. Second gen. anti-histamines do not seem to work and my MD wants me to try Xolair. Has anyone here been treated with Xolair for such  a mild case like mine and if so, what were the results. Many thanks and God bless all.