Is Your Treatment Working?

There are also some questionnaires you can fill out before your appointment to help show how your CSU impacts your overall life. These include the Urticaria Activity Score (UAS7), the Urticaria Quality of Life Questionnaire (CU-Q2oL), and the Dermatology Life Quality Index (DLQI). These can all help you and your doctor figure out if your treatment helps to improve your symptoms.

Lean into support groups. There are some online groups where you can connect with others who have CSU. They are good ways to share your experience, but also to hear from others about what treatments have worked to get their CSU symptoms under control – and what hasn't. One good option is the private Facebook group called Chronic Urticaria Support Group. The Urticaria Day website, which raises awareness of chronic urticaria, also has expert videos and patient stories, which may provide more information about other treatment options.

How to Describe Your Symptoms

It's very important that you tell your doctor how your symptoms impact your quality of life. Let them know if your CSU affects your:

• Sleep. People whose CSU isn't well controlled are more likely to have insomnia, or trouble sleeping, as well as obstructive sleep apnea.
• Physical activity. Oftentimes, people with CSU try not to run, walk, or stand for long periods of time to avoid a flare-up. But exercise is important for both your physical and mental health. 
• Social life. You may find that you often avoid social situations or cancel plans often. "CSU can cause social isolation because people are uncomfortable socializing when they're itchy or have a visible rash," says Ploch. 
• Stress levels. People with CSU are more likely to have stress, depression, and anxiety. "While stress can worsen CSU, CSU can worsen stress!" notes Ploch. "It's a terrible cycle."

When you do describe symptoms, be as specific as possible. Let your doctor know when your CSU flare started, what time of day it happened, how long it lasted, what made it get worse or better, and how it kept you from everyday activities. You can use your symptom diary to provide more details.

What Should I Ask My Doctor About My CSU Treatment?

While many treatments for CSU begin to improve symptoms within a few days, some can take weeks or months, says Ploch. A good rule of thumb is to give your current medication three to four months to work. If it doesn't, even after your doctor has increased your dose, it's time to move on, she stresses.

Here are some questions you may want to ask your doctor at this visit:

What do you think is causing my symptoms? If your doctor can pinpoint specific triggers, it may help to reduce flares. Common ones include:

• Heat or cold
• Sunlight
• Exercise
• Pressure or friction on your skin, like from tight clothing
• Vibration

Do I need other tests to help figure out a cause? Sometimes, CSU can be triggered by an autoimmune disorder like lupus, or even by an undiagnosed allergy. There are blood tests your doctor can run to check. 

What are my other treatment options? There's usually a stepwise treatment to CSU: 

• Your doctor will start with over-the-counter antihistamines, which help to relieve the itch. You may take a non-sedating one like cetirizine (Zyrtec) during the day, and a sedating one like diphenhydramine (Benadryl) to help you sleep at night. 
• If that doesn't work after a couple of weeks, your doctor may also combine at least two over-the-counter antihistamines.
• After that, the next step is to go to biologics. Dupilumab (Dupixent) and omalizumab (Xolair) and are FDA-approved for CSU. 
• If these don't work, there are others that you and your doctor can try. They include cyclosporine, mycophenolate mofetil (CellCept), and tacrolimus (Prograf). All these drugs work to help calm down your immune system to prevent hives.

After Your Appointment

You and your doctor may decide to change your treatment plan. They may have switched your medication or increased your current drug (or drugs) doses. Or you may have decided to give your current treatment some more time to work. Regardless, it's important to take some steps to gauge how well your current treatment is working.

Continue to keep a symptom diary. It will help you gain a better understanding of whether your current treatment helps. 

Get other conditions under control. If your CSU flares up due to conditions such as asthma, diabetes, or an autoimmune disorder, you'll want to work with health care professionals to treat those as well.

Try some simple self-care. It's often helpful to avoid certain common triggers like:

• Extreme heat or cold
• Tight clothing
• Alcohol

Your doctor may also want you to avoid over-the- counter nonsteroidal anti-inflammatories (NSAIDs) like aspirin or ibuprofen.

Don't be afraid to follow up. If you have questions about your CSU treatment, always call or email your doctor. They or their nurse or other staff can answer questions, offer advice on how to deal with side effects, and even advise if it's time for a medication change. Many practices have an online health portal you can use to send your questions.

Consider a second opinion. If you've tried several treatments and they haven't worked, it's reasonable to get a second opinion. CSU is very rare, and many dermatologists and allergists may not be familiar with it. Your primary care provider may be able to suggest someone. You can also contact local medical centers and hospitals.