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.  

[stephlee23]

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.

[stephlee23]

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.

[LakenMichelle]

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.

[Pennyface]

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.

[AlliesDaphne]

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.

[nanway]

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.

[nanway]

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.

[Chrystalheart]

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

[tbucci55]

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.