What It’s Like Living With Chronic Spontaneous Hives With No Known Trigger

A little over a year ago, I woke up in the middle of the night with an itchy scalp. I didn’t give it much thought, assuming it must've been from an insect bite. In the morning, I looked in the mirror and noticed little red spots on my head and along my neck. I still assumed a bug was the culprit, but over the next few days, I became worried: The spots increased in quantity and even spread down to my waist, resembling what I initially thought was a rash of sorts.

A week later, I decided it was time to schedule an appointment with my primary care doctor to find out what was really going on. They had no idea what was happening and suggested it was just a rash. With my questions left unanswered, I scheduled an appointment with a dermatologist, who prescribed treatments like antihistamines, steroids, or topical medications, none of which worked — and my symptoms still persisted.

I spent about a month searching for answers while trying various solutions — like eliminating scented beauty products from my routine because I was scared they would worsen this mysterious “rash” — yet nothing made a difference. As a wife and mom with a five-year-old daughter and three cats, I tried my best to push forward in daily life at home and at work (I’m a manager at an animal hospital outside of Memphis, TN, where I live), but at times it was difficult due to the symptoms. My husband was a big help, thankfully, in maintaining our family’s routine as much as possible.

Still, even though I felt supported by my family, I was close to accepting that this may very well be my new reality, but something in me told me to persevere. So, I decided to take matters into my own hands and found an allergist. What I thought was a rash turned out to be hives. The allergist diagnosed me with a condition called chronic spontaneous urticaria (CSU), or chronic hives with no known cause that last more than six weeks. When they shared that there was a potential treatment option available that might work for me, I started tearing up. I was so happy to finally have an answer… and what sounded like a potential treatment option.

I had never heard of CSU before my diagnosis, even though it’s estimated that approximately 1-3 million people in the U.S. have the condition. Women are twice as likely as men to experience CSU, and most people develop symptoms between the ages of 20 and 40 years old. I later learned that CSU is a skin condition with no known trigger, and symptoms can last for several months — or even several years. Because there’s no known cause, diagnosing CSU can be a long process that sometimes requires seeing a specialist, like an allergist, to get the right diagnosis — which is what I experienced.

After learning a bit more about the condition, I was ready to move forward with my allergist's recommended treatment: Xolair® (omalizumab). My allergist explained that Xolair is the first FDA-approved biologic treatment for CSU in people 12 years of age and older who continue to have hives that are not controlled with H1 antihistamine treatment. It works differently than antihistamines to help reduce the itching that comes with CSU, as well as the number of hives.* I talked to my allergist about the benefits and risks, including anaphylaxis, a severe life-threatening allergic reaction.  After being on treatment for several months, the itchiness had subsided, and my hives had begun to shrink.*

Since I’ve been on Xolair injections, I haven’t experienced any major flare-ups of my hives. I’m thankful that I was finally able to get my chronic hives under control, but the journey was not easy. Unless you’ve experienced it yourself, it’s difficult to understand the condition. It’s important to advocate for yourself until you find the support you need. In the meantime, my advice is that it’s not a lost cause, and treatment options are available that may help.

*In two clinical studies Xolair was shown to help reduce the severity of itch and the number of hives in people who continued to have symptoms that were not controlled by H1 antihistamine treatment. Individual results may vary.

After 12 weeks, people taking 300 mg XOLAIR experienced a 67% reduction in itch severity and hives, and those taking 150 mg XOLAIR experienced a 48% reduction in itch severity and a 50% reduction in hives.**

**Compared with 26% reduction in itch and 25% reduction in hives in the placebo group at 12 weeks.

The preceding interview with Heather, an actual patient with CSU, was told to Refinery29 and has been edited for length and clarity. Heather was not compensated for sharing her story. If you have chronic spontaneous urticaria (CSU), consider talking to an allergist to see if Xolair is right for you.

XOLAIR^® (omalizumab) for subcutaneous use is an injectable prescription medicine used to treat chronic spontaneous urticaria (CSU, previously referred to as chronic idiopathic urticaria (CIU), chronic hives without a known cause) in people 12 years of age and older who continue to have hives that are not controlled with H1 antihistamine treatment. It is not known if XOLAIR is safe and effective in people with CSU under 12 years of age. 

XOLAIR is not used to treat other forms of hives.

IMPORTANT SAFETY INFORMATION 

What is the most important information I should know about XOLAIR? 

Severe allergic reaction. A severe allergic reaction called anaphylaxis can happen when you receive XOLAIR. The reaction can occur after the first dose, or after many doses. It may also occur right after a XOLAIR injection or days later. Anaphylaxis is a life-threatening condition and can lead to death. Go to the nearest emergency room right away if you have any of these symptoms of an allergic reaction: 
•wheezing, shortness of breath, cough, chest tightness, or trouble breathing 
•low blood pressure, dizziness, fainting, rapid or weak heartbeat, anxiety, or feeling of “impending doom”
•flushing, itching, hives, or feeling warm 
•swelling of the throat or tongue, throat tightness, hoarse voice, or trouble swallowing 

Your healthcare provider will monitor you closely for symptoms of an allergic reaction while you are receiving XOLAIR and for a period of time after treatment is initiated. Your healthcare provider should talk to you about getting medical treatment if you have symptoms of an allergic reaction. 

Do not receive and use XOLAIR if you are allergic to omalizumab or any of the ingredients in XOLAIR. 

Before receiving XOLAIR, tell your healthcare provider about all of your medical conditions, including if you:
•have a latex allergy or any other allergies (such as food allergy or seasonal allergies). The needle cap on the XOLAIR prefilled syringe contains a type of natural rubber latex 
•have ever had a severe allergic reaction called anaphylaxis 
•have or have had a parasitic infection 
•have or have had cancer 
•are pregnant or plan to become pregnant. It is not known if XOLAIR may harm your unborn baby. 
•are breastfeeding or plan to breastfeed. It is not known if XOLAIR passes into your breast milk. Talk with your healthcare provider about the best way to feed your baby while you receive and use XOLAIR. 

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. 

How should I receive and use XOLAIR? 
•When starting treatment, XOLAIR should be given by your healthcare provider in a healthcare setting. 
•Do not try to inject XOLAIR until you have been shown the right way to give XOLAIR prefilled syringe or autoinjector injections by a healthcare provider. Use XOLAIR exactly as prescribed by your healthcare provider.
•The XOLAIR autoinjector (all doses) is intended for use only in adults and adolescents aged 12 years and older. For children 12 years of age and older, XOLAIR prefilled syringe or autoinjector may be self-injected under adult supervision.
•See the detailed Instructions for Use that comes with XOLAIR for information on the right way to prepare and inject XOLAIR.
•XOLAIR is given in 1 or more injections under the skin (subcutaneous), 1 time every 4 weeks.
•In people with chronic hives, a blood test is not necessary to determine the dose or dosing frequency.
•Do not decrease or stop taking any of your other hive medicine unless your healthcare providers tell you to.
•You may not see improvement in your symptoms right away after XOLAIR treatment.
•If you inject more XOLAIR than prescribed, call your healthcare provider right away.

What are the possible side effects of XOLAIR? 

XOLAIR may cause serious side effects, including: 
•Cancer. Cases of cancer were observed in some people who received XOLAIR.
•Fever, muscle aches, and rash. Some people get these symptoms 1 to 5 days after receiving a XOLAIR injection. If you have any of these symptoms, tell your healthcare provider.
•Parasitic infection. Some people who are at a high risk for parasite (worm) infections, get a parasite infection after receiving XOLAIR. Your healthcare provider can test your stool to check if you have a parasite infection.
•Heart and circulation problems. Some people who receive XOLAIR have had chest pain, heart attack, blood clots in the lungs or legs, or temporary symptoms of weakness on one side of the body, slurred speech, or altered vision. It is not known whether these are caused by XOLAIR.

The most common side effects of XOLAIR in people with chronic spontaneous urticaria: nausea, headaches, swelling of the inside of your nose, throat or sinuses, cough, joint pain, and upper respiratory tract infection.

These are not all the possible side effects of XOLAIR. Call your doctor for medical advice about side effects.

You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555 or Novartis Pharmaceuticals Corporation at (888) 669-6682.

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