Cholinergic Urticaria

Hives and Xolair Infusion

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Anyone had experience with monthly injections of Xolair? It is a treatment now approved for ‘off label’ use for chronic hives. Previously approved and usually used as anti rejection drug following organ transplants.

My allergist recommends it. I am 70, otherwise in fine health, had miserable hives 3 months.

I appreciate any thoughts.

-Bess

Comments

  1. Hello, Bess.
    I’m sorry to hear of your hives. Xolair (also referred to as Immunoglobulin-E therapy, IgE therapy, or Omalizumab) has been used by some people on this forum. Some have reported relief, while others have reported little relief. It does have some risks and side effects. I was never willing to try it myself, but that doesn’t mean it won’t help. Just be sure to talk to your doctor about the side effects, and then you can evaluate whether you think it’s worth it. Hopefully someone will chime in with their experience. Thanks for your post, and I hope you get well soon.

  2. Hi Bess,
    I am a 44 year old female that has been experiencing hives since March 2015. My allergist recommended the Xolair shot and it has worked well in conjunction with OTC allergy meds..I recieve 2injection in each arm every 3-4 weeks..It takes some Individuals longer to heal than others. I was a miserable person until I started the shots.. I’m still getting them and hopefully I am cured real soon. I hope my experience with the shot helps your decision to try it.

  3. FOR $2500 PER SHOT AND CARRY AN EPI PIN THE REST OF YOUR LIFE. NOT FOR ME. I HAD ONE AND HAD NO CHANGE. FOR THAT AMOUNT OF MONEY I WOULD THINK I SHOULD HAVE FOUND THE FOUNTAIN OF YOUTH AND COULD BE 25 AGAIN.

  4. My son (aged 30) just got one last Thursday (Dec. 31, 2015). So far, he has noticed no change. It was recommended that he get one more next month whether shot #1 seems to work or not. The Dr. (a close family friend) said that sometimes relief kicks in after the 2nd shot. He also said the side effects, including increased risk of cancer, are minimal, and that no one in his practice (which has at least 4 Dr.s) has ever even had to use the epi pin. He said in the 10+ years that the shot has been used, the cancer scare seems to be, at least so far, not proving to be true.

  5. HI All,

    I am 35 and have been battling Severe Chronic Urticaria for 9 years. With each year progressively getting worse. I battle massive outbreaks almost daily, some days not so bad, with no rhyme or reason as to why. I have changed my diet and tried several different eating styles to try and curb this auto immune disorder. From strict chicken, rice and water diet for 30 days , to Paleo style diet for 6 weeks. The Paleo consisted of no sugar, no wheat, no preservatives, nuts, dairy certain meats etc. Along with the Omalizumab (Xolair) injection. I received the injection for 8 months. The first 3 months were euphoric, and each passing month thereafter they began to come back. I was advised to dbl the injection but the cost was beyond my limits. I have been on prednisone, atarax, tons of anti histamines and all meds are rarely having effect. I am mentally and physically exhausted. I have 3 wonderful children and an amazing fiancé who are so supportive. I am struggling more than ever lately and am not sure how much longer I can do this.
    I recently discovered that drinking a fair amount of alcohol dissipates my hives overnight, lasting for around 24 hrs. So needless to say I have been relying on the alcohol for relief. With my family understanding and being such a strong support system it helps. Although I am now feeling guilt for consuming alcohol regularly, it provides me with much needed relief. I don’t know what is worse, the guilt of drinking or the mental exhaustion of the uritcaria. Is this causing un-needed stress or relief ?
    I’m confused, broken and not sure what to do anymore. Thankfully I have maintained my job consuming so many antihistamines and feeling exhausted daily. I do it for my family, without them I would not have lasted this long. Thank full yet terrified, I cannot endure this much longer. Any advice or a way to cope with this would be appreciated.

    • We need to sweat. Sauna, exercise and restict salt. I use a steroid called betamethasone. It is a cream used on outbreaks. It helps but not a cure.