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.  

[jbug123]

I have been living with CIU, deep pressure hives, cold and heat induced hives for 30 years.  I had my first injection of Xoliar on July 22nd.  I still have hives and I am hoping so much that these will go away and I will have a new life.  I also have psoriais on 95%of my body.  Does anyone have psoriasis too.  I f so di Xolair help the psoriasis as well as the hives.  It is so good to read this news about people losing the hives after a few days and some months.
Thank you
Julie

[jenjr1943]

My doctor filled out the form, I signed it and they sent it to Genentech. The process could take about 2 weeks. The dispensing pharmacy should call you to set up the first appointment after they get approval. My doctor gave me the phone number for the pharmacy and I called them to check on the approval process. This could help you speed up the appointment process if the approval has been received and the pharmacy has other tasks ahead of calling you. Good luck! This has been a miracle for me as you can see from my prior post. My hives were gone in 3 days and I tapered my antihistamines for 10 days and now take none. Had my 2nd shots yesterday and still no side effects.    

[garrisom]

Would anyone care to elaborate on the paperwork process to get xolair approved? When I go on genetech's website they have a section that explains that both you and your doctor have to submit a form, and that the process can take two weeks? Their website isn't completely up-to-date, so I wondered if this is old news and a remnant of the days prior to FDA approval. In fact it's hard to delineate on their website if that paperwork is only required if you're applying for co-pay assistance....very confused.

My doctor agreed to prescribe the medication and called the compounding pharmacy right away. They called my insurance and it is approved on their formulary (but that's as far as they could get with the process as it's a weekend and wherever they receive the xolair from was gone until Monday.) I'd just hate to get the bad news on Monday that I'll have to wait an additional two weeks.

I'm hopeful I won't have to wait that long...although, I've suffered for 16 years, I suppose 2 more weeks won't kill me!

[tammieodom]

I seen that this post is old, but I wanted everyone to know that since my 17 year old son has been taking Xolair for two months, that his hives have totally stopped.  He has had this condition for over two years and nothing was working for him.  The Autoimmune medicine Cycosporine was helping, but he was having to take it along with 4 other pills two times a day just to calm his hives, it never really went away.  He explained it as being tolerable, but still itching.  I am so thankful that the FDA finally approved Xolair for hives a couple of months ago, And so thankful that I have insurance that leaves me with only $18 a month to pay. I also wanted to let people know that there is a Xolair assistance that pays 80% of the medicines or of any co-pays that you  may have.  It is to my understanding that this assistance is available to anyone. So those who have severe hives, there is hope and assistance out there.

[jenjr1943]

I had my first Xolair injections (300mg) on June 11, 2014 after a year of suffering with Chronic Urticaria. In two days my hives were gone completely. No hives have appeared to this date. No noticeable side effects. A miracle drug for sure.

[Divinchi24]

Is anyone experiencing bone pain from taking this medicine? Two weeks into my first shot I had bad bone pain in my legs,  after the second shot it's worsen to the point that I am unable to walk up stairs