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.  

[sortedwhammy]

Ok so this is a older post but I have a questions?  7 yrs ago my father was in ICU for 4 months just before he past away.  I have had UIC since it did ga away when I saw a dermatologist in 2010, She put me on a combo of Cellcept and Isoniazid I took it for about a year and had awful side effect of diarreah she gave me folic acid to take but it did help.  I finally decided I couldnt take it anymore and just stopped.  I recently have a return after 4 yrs, i have been to my family dr a couple time of course you get a steroid shot and pills to take and yes it gets rid of them but I cannot take them forever, so I am going back to the dermatologist next week and hoping for a new cure rather than the cocktail I had before.  Anyone have a suggestion for me, is Xycal that good for the price?  My is stress related according to my doctors.  

[amytara]

Hello. i was just reading this email.. i also live in nyc and suffer from chronic hives. i was wondering if you could recommend a protocol and who to help me in nyc??? i am suffering for too long now and need help. please email me at ***@**** thank you so much. amy

[Nananeen]

Hi.  Your story sounds so familiar.  I have idiopathic auto immune dissorder. With a few outbreaks I can relate it to stress, like when I had to have a coloscopy and was freaked out about having to drink that awful stuff. Did it to myself.  Though I try not to "worry" about things it doesn't seem to work.
Though my feet and hands have swollen a bit they haven't been an issue.  But when my eyes swell so bad they are almost closed or my lips are huge then I have issues.  Then there was my tongue swelling. I had been going  to an allergist that did every test imagineable.  After the tongue swelling he referred me to an immunologist. I was in the ER 6 times in 2 1/2 months.  They just gave me prednisone in high doses.  Almost 20 lbs later I do not want any more prednison!  My doctor told me about Xolair about 6 weeks ago when I was having an outbreak. He requested approval from Medicare but they won't cover it.
They said the doctor can buy it and they would then decided what they would reimbuse him.  He has a small practice and can't afford to do this since he feels I will need atleast 3 shots at somewhere around $1,000 a shot. Then I had a smaller outbreak 4 weeks later and after seeing him he said he was going to call Medicare personally and find out  why I am not being approved.  Havent heard from him yet and I am sympton free so I havent called him.  I am hoping that sooner or later it will be approved.

[JulesJo]

I have had CIU for 11 months.  So far I have had two injections of Xolair - 300 mg. once a month.  I have not seen any improvement at all.  Are there others out there like me?  How long did it take until you saw improvement and when did you give up?  Luckily, my insurance covers the injections.  I'm feeling hopeless....

[tamara424]

Could anyone please tell me their success with Xolair as treatment for severe eczema/asthma? I since have also had chronic urticaria on top of this eczema, now for 6 yrs. Previously, I had gone the Prednisone route and finally our last straw was to go with an immuno drug, Cellcept (It's a love/hate relationship!) It clears me up, for the most part, but the scary side effects and being open to all disease is a major concern esp. when I get ill with some virus, etc..My skin went crazy as I hit peri-menopause and I've tried EVERYTHING. As a todler, I had severe skin issues for 12 yrs then it'd pop up here and there all through life..waxing and waning (now still dealing with all this some 48 yrs. later) but these last 6 yrs. have been pure hell! I had to quit work and it's kept me home bound due to the 24/7 itch that no DR can stop. I've tried every test, med, natural thing/diet under the sun...even Xolair, in the past, but the pulmonoligist, who was asked to administer it, back in 2005,. hesitantly, thought It wouldn't work and that I'd see results right away if it did...which I didn't. So, he stopped the injections. Recently, I travelled to consult with a Rheumotologist at Cleveland Clinic and he said there are better findings now with Xoliar helping skin, and I should try it again. It was initially a fight back in 2005 and after being denied I had to plead with Blue Cross to allow me to try it. I did for a few months, then later again when rashes were worse, but I'm wondering now if I had stayed on it long enough, both times. The Cleveland doc said they sometimes only start to see help after using Xolair 8 mos.and felt the previous doc didn't keep me on it long enough. Any input would be greatly appreciated! I guess I'm aslo interested in knowing if Xolair has effected your eczema in a positive way. Thanks!

[tbucci55]

I have had severe uticaria dermatographism for about 4 years now.  I have tried it all.  I was on Cyclosporine for about 1 1/2 years and it helped very little.  I started taking the Xolair shots along with the Cyclosporine and several other drugs 11 months ago.  And yes paying the $750 a month for it for a few months before getting approved by my insurance.  It has helped me tremendously.  I hardly had any breakouts.  However...I have just this past month started to get bad again.  I pray that I continue this goes away again.  I can't handle going back to the way it was.  It was unbearable. By the way, I had Health net and now I have United Healthcare.  Both covered my shots.  Good luck to everyone!  I know how hard this is to live with!