Xolair works wonders for CHRONIC HIVES! I saw results immediately

I began experiencing physical urticaria in March, with a rapid onset after a surgery in which a metal implant was used to correct a broken wrist. After being prescribed to high dosages and mixes of Prednisone, Zantac, Xyzal, Allegra, Singulair, etc. I was approved to start Xolair in May. The results were tremendous and I was able to get approved for the Copay program (does not depend on income). After living 30 years of my life with very little issues, the rapid onset after surgery led me to have the implant removed this last Friday. Post-surgery I have had NO hives. My surgeon, PCP and Dermatologists all told me it was a one in ten million chance that I was having a reaction to the alloy metal. However, my amazing Allergist (who initially led me to Xolair) let me know that studies on metal implant allergies are so limited and difficult to diagnose. I was lucky that my symptoms from the allergy were so quickly evident that it became very easy to point to the implant as a potential cause. I would urge anyone who has chronic urticaria and a metal implant to consider this rarely diagnosed cause! 

I've had Chronic Spontaneous Urticaria for 14 years. For the first few years it was managed fine by a small daily dose of antihistamines, but then I had anaphylaxis on 2 occasions so was told to avoid salicylates, and given different antihistamines and an epipen, then a few months later had another episode of anaphylaxis. I was put on corticosteroids for a bit to help me recover but the Drs didn't like me being on them as they said they get less effective the more they're used, so I was taken off them and had other meds increased instead to make up for it. Last year I had another episode of anaphylaxis, and was sent back to the allergy clinic. After 2 specialists being unable to help me, I saw a third, and I now take 1st, 2nd, and 3rd generation antihistamines as well as a leukotriene receptor antagonist. Most of the antihistamines I take are the max they can prescribe. I had to have all my medications re-jigged a few months ago because of the anticholinergic load being more than they deemed acceptable, and I was having awkward side effects like hair loss and the mucus in my nose and throat drying out and causing regular nosebleeds. I've gained weight, lost my job, am almost perpetually tired, can't go outside and can't even go in some rooms of my house because of how bad my reaction can get, and I have a very restricted diet due to cutting out more salicylates to try and help as well as getting rid of any beauty products etc that contain them - and this all still isn't enough to control my urticaria. I'm itchy to varying degrees every day (from a minor irritation to wanting to rip my skin off when it feels like it's on fire), and have hives and swelling several times a week. I'm also very reliant on my mother and her goodwill as I can't live alone like this, which is frustrating in and of itself - I'm in my 20s, I should be out living my life!

I'd not heard of Xolair until my specialist said she'd booked me in to have them, and I had my first injections yesterday - maybe it'll work but I'm not pinning any hopes on it - I've been so hopeful in the past only to meet disappointment, and my specialist told me while they hope it'll work, there's pretty much an equal chance that it won't, or will only work a little.

It's been emphasised to me that Xolair is one of the 'last resort' medicines due to its possible side effects, so to those of you who haven't tried it yet but want to - try the different mixes of medications you can get with antihistamines and leukotriene receptor antagonists before going for xolair, as they may work for you. Yes, tablets are annoying, but if they help then that's that. And at the end of the day listen to your GP, if they're recommending other things than xolair there'll be a reason they are.

Hi Jill,

I have been suffering with chronic hives for 6 months.  After having every test under the sun to try and figure out what is causing the hives.  No allergies, God only knows.  Monday I was given my first Xolair injection 300 mg.  My Blue Cross plan is denying coverage, so it may be my last shot at $18,000 a year.  It's only been a few days, but after taking every antihistamine available, my Physician is now treating me with Celebrex and has advised to have Xolair injections monthly.  I've read the bad side effects, but decided the hives are out of control and I need to take the chance.  It's only been a few nights, but the hives are minimal.  Today I'm feeling very achy and my back feels like it's on fire.  Has anyone else had a strange reaction to Xolair?  I'm going to call my doctor now, but wondering if this is par for the course?  Thanks for this great discussion and any suggestions or comments.

Ginger

Hi Jill --- my first two injections failed to show much change BUT my second set have made me virtually hive free now for 2 weeks!  I didn't have the issue like you described, but I did have some rough days with ongoing break outs of hives.  From my personal experience, I would encourage you to give it another chance.  Hopefully your second treatment will do well for you as it has for me!!!  

Hi Jill, I have had CU on and off for 15 years, have tried every medicine with prednisone being the only that worked.  I was apprehensive about going on Xolair but I did and it has COMPLETELY changed my life.  I can barely even tell I’m sick. Sometimes I feel my skin inflammed if I eat junk but that is nothing.  It took me 6 months for the treatments to finally work (I was losing hope), and it finally did.  I have been feeling great for 4 months now.  I will recommend Xolair to anyone.  I actually have a quality of life. I’m not in pain every minute, I can go out, and I can wear clothes, it’s a miracle. 

Ive had it for 22 years.same issues your having. So sick of it. It went away at around 47 years old only to return this year(50). I want to try this med

I am waiting to try xolair tried all other medications nothing has helped

I am willing to give it a try , Thankyou for our comments 

Jill do you still take antihistamines with your xolair

Hi all. I'm from S.A. I have been on xolair for approx 3 years. I had suffered with urticarria for approx 10 years and it was an everyday occurrence. After the 1st dose of xolair it took effect and don't require it every month and I am so grateful. But I am now experiencing extreme anxiety and flu like symptoms. Has anyone else experienced this?