Patient perspective: Chronic urticaria

INTRODUCTION — This topic was written by an individual patient diagnosed with chronic urticaria. It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Chronic spontaneous urticaria: Clinical manifestations, diagnosis, pathogenesis, and natural history".)

●(See "Chronic spontaneous urticaria: Standard management and patient education".)

●(See "Chronic spontaneous urticaria: Treatment of refractory symptoms".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. You can share this content directly with your patients:

●(See "Patient education: Chronic hives (The Basics)".)

BACKGROUND — I have been living with hives for approximately 16 years. One June night, I woke up with an itchy feeling on my legs. I turned on the light and found red welts all over my body. I panicked and decided to go to the emergency department (ED). I was taking medication for a sinus infection and was told that I was having an allergic reaction, even though I'd taken this medication in the past. I was told the welts were hives and that they would go away. I was given two days of prednisone and sent home. Two days later, the welts were back, so I returned to the ED. They gave me more prednisone and instructions to call an allergist, as the ED doctors and nurses didn't know what else to do.

The first months after my initial onset were a blur of different allergy medicines and antiinflammatory medications; doctor appointments with an allergist and my primary provider; being placed on a salicylate diet; being taken off my everyday medications such as blood pressure and birth control; switching out laundry detergents and my bath soap, anything that could cause hives; and more rounds of prednisone. It was exhausting, overwhelming, and frustrating to continue to see providers who were limited in their knowledge and frankly in their perspective of how challenging the hives were and how to help. My primary care provider was chiding me for being impatient and was so cavalier about my hives that I switched providers. I tried to be patient, but ultimately the "care" I received was not controlling the symptoms, and the experience fueled me to find someone else, someone more equipped, who could help. Instinctively, I knew there had to be someone who had answers.

One of my coworkers suggested finding a teaching hospital, because "they're usually on the cutting edge of information," and I was lucky enough to live in a city with an amazing teaching hospital. I reviewed their website and found the person I hoped could help. Having been diagnosed with hives by ED physicians and an allergist, I had researched chronic urticaria on my own, and in August, almost two months after my initial onset, I was able to get my first appointment with a specialist in urticaria. I felt a huge sense of relief.

Prior to the first appointment, I continued my extensive research on urticaria, and I found a hodgepodge of mainstream treatments, clinical trials, eastern medicine, special diets, and overall, no clear answer as to "why." I was also worried that the hives would never go away. I found a support group on the internet, which helped me gain perspective and find comfort that I wasn't alone. After my research, I had lots of questions, and although some were not applicable, the specialist actively listened to each one and did not make me feel like my questions were misguided or unreasonable.

Some of my questions were:

●Should I have a hive biopsied?

●Should I have an autologous serum skin test?

●Can prednisone cause Cushing's syndrome?

●What is mastocytosis and should I be tested for it?

●Should I get tested for celiac disease?

●Should I get tested for multiple sclerosis?

●Should I get a flu shot?

The specialist gave his thoughts on why some treatments were not necessary, what next steps should be, and he respected my desire to be a part of my treatment.

DIAGNOSIS/TREATMENT — At the initial visit with the specialist, I was already taking colchicine and cetirizine, and he added hydroxyzine at gradually increasing doses. Several months later, we increased the hydroxyzine further and stopped the colchicine, which didn't seem to be helping much. After that, I started dapsone, which I remained on for almost two years. I also stopped and started various other medicines during this time, but after nearly a year on the dapsone-based regimen, I was hive free. At that point, we began slowly reducing the dose of the dapsone until I was able to come off it altogether as well as the antihistamines. I remained hive free for about five years.

Out of nowhere, the hives reappeared. We tried increasing my cetirizine to the maximal dose possible; this was not effective. I was put back on dapsone with the addition of mycophenolate. We also biopsied a hive to ensure that I didn't have urticarial vasculitis, which I did not. Unfortunately, my body did not respond to the dapsone the way it had the first time, and it wasn't really helping, so I was taken off dapsone, and we increased my mycophenolate and added back hydroxyzine. While the mycophenolate helped, it did not control the hives, and I was still taking prednisone from time to time.

After about a year of the mycophenolate with periodic prednisone, my specialist talked to me about omalizumab injections. At that time, omalizumab was approved for severe asthma patients but was showing promise in chronic urticaria patients, but he warned me it would be challenging to receive insurance approval. With forms completed by me and my doctor, it took several months to get approval from my insurance along with the manufacturer's prescription assistance. Without the manufacturer's assistance, it would not have been feasible. At the first injection, I waited approximately two to three hours in the doctor's office to ensure I did not have an adverse reaction. Fortunately, I did not. One week after my first omalizumab injection we reduced the mycophenolate. After two months on omalizumab, I began to show progress, but not the immediate disappearance of hives most patients seemed to have. I stayed on omalizumab for about six months, at which point I was able to come off it and remain hive free.

About two years later, I had a third recurrence of hives. I was initially responsive to omalizumab, but due to breakthrough hives, we added the drug tacrolimus. Because tacrolimus can injure the kidneys, I was required to do monthly laboratory work. After a year or so, I was able to lower my dose of tacrolimus, and a while after that, I started increasing the time between omalizumab injections to five weeks, six weeks, etc. I was eventually able to stop the tacrolimus and just stay on the omalizumab injections. I continued spacing my injections and was able to stop omalizumab about a year later.

I had a fourth recurrence of hives, possibly due to having received the coronavirus disease 2019 (COVID-19) vaccine, which stimulates the immune system and can trigger hives in people who are prone to them. I spoke with my doctor before getting the vaccine and despite a possible reaction, we believed it was important to receive the vaccine, and since then, I've received all boosters allowed. I received monthly injections of omalizumab as well as a daily dose of tacrolimus. I have been hive free for almost two years now.

COMPLICATIONS AND FOLLOW-UP — In the beginning, my doctor let me know there could be complications from dapsone, thus regular blood work and bone density tests were assigned to make sure none arose. As each subsequent recurrence came, different medicines could cause different reactions such as a weakened immune system, dry mouth, and liver and kidney issues. Each time blood work was taken before and during to ensure there were no issues. I never worried, as I knew my doctor was watching for any complications and ready to act if necessary. I also didn't worry because I trusted my doctor.

The biggest issue has been the discomfort and inconvenience of my omalizumab injections. Omalizumab is not an easy medicine to take. It is a very thick liquid that takes time to inject, it stings and is slightly painful, and there are two injections, one in each leg. In the beginning it was very inconvenient because I had to schedule a trip to the doctor for the injections and wait 30 minutes each time after getting the medicine to make sure I didn't have an allergic reaction. I also had to carry an epinephrine autoinjector, just in case I have a delayed allergic reaction after I leave the office. Things became a little easier at the beginning of this last reoccurrence because I had no allergic reactions and so I no longer needed to wait 30 minutes each time. And finally, with the last flare up, I was able to self-administer my injections at home. I'm grateful that it's become more convenient.

COMMUNICATIONS/RESOURCES — I was lucky to find a doctor who is on the cutting edge of research and education, and I can email my doctor via a portal whenever I have questions or concerns. I still do a lot of research on my own; I pay attention to new drug trials and new medicines that seem to have promise, via the Mayo Clinic and the Centers for Disease Control and Prevention (CDC).

When I was just starting this journey, I found a group named International Chronic Urticaria Society or "ICUS," which has a Facebook page. This is a great source for people to ask questions, vent, and learn from others who are suffering as well.

WHAT I'VE LEARNED — Chronic urticaria is not for the faint of heart. It can be debilitating both mentally and physically. When I'm hiving, I'm in physical pain because the hives are so widespread they make my skin tight. I'm tired because I don't sleep well due to the itching and the pain. I have hives where I sit, because pressure makes them worse, and I often have angioedema on my lips and face. I hate going out when I'm hiving, especially when it affects my face. But I've become better at calming myself, when necessary, and not automatically "going dark."

My family supports me and empathizes with me, but no one truly understands it unless they suffer from hives themselves or from another chronic disease. I've learned not to be annoyed when well-meaning people ask if it's my laundry detergent or stress causing the hives. I've spent well over $7000 on appointments, tests, blood work, copays, and medicines. I've lost time with friends and family. I've been unable to attend events due to not feeling well or just hiving so badly it was impossible to go out and enjoy myself.

I suspect my last recurrence will not be the last, so I appreciate all I've learned, such as what can make hives worse (like lying around), to stop asking "why" with chronic urticaria, and that it's okay to be frustrated, to have bad days, and to wish you'd never heard of hives. I've also learned that I am a fighter, that I'm stronger than I thought, and that knowledge is power. Don't give up. Keep going. Cry if you need to and find a therapist or a friend who is a good listener.

If you're just starting on this journey, ask questions, be proactive, and find the best clinicians in your town or city who can help you. Ask your doctor if they will be your partner in your health care, not just the doctor. Do your homework and be your own health care advocate.