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Anyone had experience with Xolair for the treatment of chronic autoimmune urticaria?

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.  
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Avatar universal
Hello,

The FDA approved Xolair for CU around March 22nd.  About two weeks ago.

I too suffer from chronic hives and angiodema.  While mine does not seem to be as severe as others on here, I am still working with my doc to get the shot in the next two weeks.  He has to attain the shot and seek pre-approval from bcbs.  

I have many weird autoimmune issues which mainly occurred after a c-section.   They eventually subsided, but re-occurred when I came off the pill.  I believe estrogen levels are a trigger, but not the cause.  I also believe other things like a c-section, surgery, stress, or getting sick will put the immune system into a state of hypersensitivity.  I could be wrong, but these have been my experiences.  I have another disease that clinical trials have begun with Xolair.  

Anybody had side effects other than swelling at the site of injection?
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Avatar universal
I am 60 years old and my hives started a few years ago after treatment for head lice.  I got rid of them for 2 years and then left the country and when I got back, the hives broke out with a vengeance.  I got the Xolair shots and it went away.  They would not tell me the cost.  After 2 years of shots, they started billing me.  I quit because I can't afford it pay that much.  Xolair DID work-95% improvement.  No side effects.  Just the stress from the billing.  I quit 4 months ago and the hives are back.  I know it's an allergy because Benadryl gets rid of it but I have to take it every 2 hours with a Tylenol.  My hands are swollen, itchy and red and deep pain in the palms..  Good luck to you all.  There IS relief available, it just costs a fortune.  (250.00 a month for my share after the insurance pays. 1,500)
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Avatar universal
I am a chronic Hives sufferer.  I get good results with a homeopathic melt under your tongue pill.  It is Hyland's Hives.  You put three of the little pills under your tongue and let them melt. They do not taste bad at all. I get relief within 10-15 mins. Since they are homeopathic, you can take them every 3-4 hours, if needed.  You can get them on-line or at most health food stores.  I do not leave home without them.  They work way better than Benedryl without any side-effects at all.  Give them a try :)  Good luck!
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Avatar universal
My son 17 yr old son has dermotographia (skin writing) which we believe was onset due to macrobid antibiotic.  Antihistamines worked for a few months to control the horrific itching and raised red welts, but no longer.  Prednisone helps but he cannot be on that for any extended period of time.  Dr. is recommending Xolair and I am nervous about side effects but feel terrible for his suffering.
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Avatar universal
Ive suffered with CIU for 9 months known. They showed up a month after my daughter was born. Every single blood test (autoimmune tests ec), urine tests, skin biopsies and ultrasounds have come back completely normal. So far Zyrtec, Singulair, Zantac, high dose Reactine, Benadryl, and Claritin have failed to stop or even reduce flares. I have been on and off prednisone about 7 times in the past 9 months and am experiencing some nasty side effects as a result, however it is the only treatment that seems to work. I was on Xolair for 5 months with no luck. The side effects are extremely rare but your first 3 injections they monitor your blood pressure and watch you for 2 hours to make sure theres no reaction. Although Xolair didnt work for me it is often the "miracle" drug for CIU sufferers. Its worth a shot for your wife. I am now on plaquinil but it can take up to 3 months to work. I hope theres a cure in sight. I am so frustrated. They have tested me for everything under the sun, as well as tried all the common treatments to no avail :(
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Avatar universal
I had my injection about 24 hours ago and my body blew up much worse in parts that never used to get them, like my scalp, face, neck and around my throat, for fear of anaphalysis - they admitted me, and I am now just back home. They cannot tell if I am allergic to it or it is simply my CIU manifesting itself. While many patients have had positive responses, I have more dull headache, muscle ache and listlessness. Lets hope things will improve from here on and i shall keep you posted.
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Avatar universal
I have suffered for 6.5 years on and off, most severe in the last 12 months, done the whole cocktail of AH + pred + cyclosporine. Odd as managed to get down to 2 - 3AH a day hive free and then 2 weeks ago, it erupted again. I have had it in April/June/Aug/Oct and now again in April.... I went to try Xolair for the first time yesterday and got admitted to hospital overnight for fear of anaphalysis, so far I am more covered than before and havent seen any +ve effect, except muscle pain and headaches. I hope it will kick in soon, otherwise I have pred as a back-up. The issue is that I feel that my body rejects all of these suppressants, in fact I felt so upset that in Oct, I fasted for 3 days to try to reset - and post that, the medications managed to work until 2 weeks ago. It does feel like a horrendous roller coaster - and like most people have exhausted all medical paths and yet have no cause/effect or even knowing whether we will get better with time.
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1 Comments
Ive struggled with Chronic Idiopathic Urticaria for almost 10 years now and i cannot possibly list the number of doctors i have seen or the list of medication i have taken in the past 10 years. I have carried a 7-day/am-pm pill box in my purse since before i was 21 years old. I understand the aggravating and sometimes depressing moments in a persons life that struggles with Urticaria. I hope that Xolair has worked for you, I started taking Xolair last December and for the most part it has worked. I get hives here and there but for some reason they're only on my feet/ ankles. If it has not helped you, please know that your not alone in this and others do understand the personal struggle urticaria can bring to your life. Keep your head up.
Avatar universal
I am Finally getting my 1st Xolair Injection today and I am blessed that my insurance is paying for it for the whole year! I have been getting hives for 10 years now and I pray this helps!!! Will do a follow up  post with my results.
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Avatar universal
I dealt with CIU for well over 20 years, precipitated after a bout of postpartum thyroiditis.  Like many, I really believe hormones and traumatic events are triggers for this awful syndrome.  I deal with hives on my face and neck primarily, which appeared every few months initially, to being there all the time within 5 years.  I tried everything from antihistamines (how does one still stay standing on 50 mg of Atarax 4x/day???), H1 blockers, immunosuppression with Tacrolimus and/or Prednisone, Singulair, Xyzal and Elidel cream, to no avail.  I never was willing to try Methotrexate.  Stress, illness, sun, hats touching my face, jewelry, anything would throw me into a horrible flair.  My allergist fought very hard to get my Xolair, and to get me copay assistance for it when it was first being approved for CIU.  I started the injections in January of 2014 and have not had a flare since starting them.  It has been life changing.  I still avoid the sun, which was a major exacerbater to my hives, but if I AM out in the sun, I have not yet had a flare.  I have also been able to come off of all the supportive medications except 5 mg of Xyzal daily.  Up to this point, I have received 300 mg every 4 weeks.  Now that i have been off of all the supportive meds for sometime, they are are going to stretch my interval to every 6 weeks and start trying to take me off.
This medication has definitely given me quality of life back, but long term, I have noted that my upper arms have become so achy that at times, I cannot reach a glass in a cupboard, put on or take off a sports bra, put on my seatbelt, and cannot sleep with my hands under my pillow as I am used to.  This has gotten progressively worse since starting the injections, and although Aleve will take the edge off of it, it does not give me pain free time.  Also, I absolutely don't want to take an NSAID on a regular basis.  I have tried taking Aleve the day before, icing the injection site, taking Prednisone the day before and a few days after the injections, none of which help.  There were a couple of joint conditions my allergist tested me for when I shared this upper arm pain issue with him, but it was all negative.  I'm wondering, has anyone else who has been on Xolair long term experienced this?  I cannot find anything in the literature except some basic discomfort at the injection site that is documented as a side effect.
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2 Comments
Ive got my first dose three days ago. I suffer from achy muscles and joints from lupus to. I was so crampy the morning I could barely get out of bed. When I got injections I had all sorts of side effects. Even a couple hives and itching. Day three. Still taking benedryl. Hope it starts working soon. I cant take nsaids for pain or steroids. So yes I get crampy too. Sorry for the story.
Ive got my first dose three days ago. I suffer from achy muscles and joints from lupus to. I was so crampy the morning I could barely get out of bed. When I got injections I had all sorts of side effects. Even a couple hives and itching. Day three. Still taking benedryl. Hope it starts working soon. I cant take nsaids for pain or steroids. So yes I get crampy too. Sorry for the story.
1064552 tn?1322579758
I have been having escalating problems for almost 30 years, but this year the idiopathic angioedema and urticarial skyrocketed and the asthma/shortness of breath (due to lung inflammation) have been poorly controlled, but not terrible.  I have oral allergy syndrome and oral latex syndrome in addition to a pretty long list of allergies and recently also found out that I am IGG deficient (with 3/4 subclasses also deficient).  What a mess.  Prednisone doesn't help, the arsenal of allergy medication only barely helps.  I am on an extremely limited diet (almost no plant based nutrition) until we can get this under control.  So much anaphylaxis.  I get anaphylaxis with almost every skin test panel I get and from many foods.  Ugh.  I'm starting xolair tomorrow and may? be starting igg therapy soon also.  I'm lucky that my insurance was easy going about it.  I got approval within a month or two.  There is also now a copay that most people will qualify for on the xolair.com/copaycard site.  It reduces your copay to $5 for up to a total of $10,000 per year.  And you can get it the next year... etc. Check it out.  It can really help the financial part.  They also have a more inclusive program for people who meet the financial requirements.  The xolair.com site has info on it.  Good luck to you all.  Jen
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Avatar universal
Thank you for your comments.  I am going to start seeing a hypnotherapist to help me and was interested to see that someone else tried it.  
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Avatar universal
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.  
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Avatar universal
Hello aren't you concern about the cancer side effect?
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Avatar universal
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.  
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Avatar universal
Yes
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Avatar universal
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.
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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...:(
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Avatar universal
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
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Avatar universal
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.....)
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Avatar universal
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?
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11443041 tn?1431445907
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!
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11443041 tn?1431445907
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.
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Avatar universal
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.
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