Chronic Urticaria (Hives) FAQs and Resources

When I started my journey with this disease I had a lot of questions. I hit Google to do some research and was disappointed with the lack of easy-to-read and digest information. Most of what was available were scholarly articles about a tiny study here and there.

Now there is more information but it’s scattered about and full of conflicting information. Some of these questions you may not even think to ask.

My goal for this page is to be a quick guide to Chronic Urticaria so that you can quickly learn some basics that took me years to figure out.

I am not a physician and nothing on this blog should be taken as medical advice. This is a general overview of my own research and personal experiences. As always you should check with your physician before making any changes to your treatment plan.

I may earn a small commission from products purchased through links on this site. I appreciate your support and would never link to something that I would not personally use.

What is Chronic Urticaria?

Urticaria is the medical term for hives. Hives are considered chronic when lasting 6 weeks or longer.

There are different types of Urticaria as well.

Chronic Spontaneous Urticaria (also called chronic idiopathic urticaria) where hives and/or angioedema occur with no unique trigger.
Inducible Urticaria, which can be caused by friction, pressure, scratching.
Cholinergic caused by heat or cold (also considered inducible).

Oftentimes, those with Chronic Spontaneous Urticaria (CSU) have other urticaria as well. Have you ever noticed that when you scratch your hives, more appear where you scratched? Or if you take a pen cap and run it along your skin you can “draw” with your hives(Dermatographia)? Or you can’t be in the cold or heat without a flare-up? You likely have more than one type.

Is Chronic Urticaria an Allergy?

Although allergies can cause hives, typically if you have chronic hives it is not caused by a specific allergen. This is usually the first thing ruled out by your doctor.

In the rare cases that chronic hives are caused by an allergy, they should go away when exposure to the allergen is eliminated.

Is Chronic Urticaria Contagious?

Chronic Urticaria is not contagious. Although some symptoms manifest topically, it is actually a disease of the immune system.

Is Chronic Urticaria Hereditary?

Maybe. There are some genes that have been noted to contribute to conditions that make you more susceptible to chronic hives.

The mechanism in many patients is thought to be autoimmune and those diseases tend to run in families.

There are also genes that can make you more susceptible to having low DAO enzymes, which can contribute to excess histamines, thus hives.

I have had inducible hives since childhood, and chronic spontaneous urticaria since my mid-twenties. My son also has both inducible, and spontaneous urticaria. I don’t know of anyone else in my family with hives.

CIU VS CSU. What is the difference?

CIU stands for Chronic Idiopathic Urticaria. Idiopathic is the medical term “unknown cause”.

CSU stands for Chronic Spontaneous Urticaria. Spontaneous meaning “without external influence”.

A few years ago a new guideline was released to change the diagnosis from Idiopathic to Spontaneous.

Unfortunately, many physicians do not actively keep up with the newest in this disease and are not aware of this change. This causes a lot of confusion in the Chronic Urticaria community.

When I was first diagnosed, it was idiopathic. I started seeing a lot of “spontaneous” and I thought that their disease was different from mine.

Many are still using the term “idiopathic” and view these as though they are a different disease. This is why in most of my posts I simply refer to it as Chronic Urticaria.

This name change is a positive thing as it shows that the disease is no longer “idiopathic” and although we can’t pinpoint the same cause for every patient, we know that this is a mast cell disease. Perhaps we will be taken more seriously than before when many of us were told that it was psychosomatic.

What Kind of Doctor to See for Chronic Hives?

Many people think of hives as a skin issue and go to dermatology. Chronic Urticaria is a disorder of the mast cells, a part of our immune system.

Dermatology can certainly treat you, but immunology may be a good place to start if you are just beginning your journey or not getting appropriate treatment from your dermatologist.

You can ask your primary doctor for a referral to see an allergist/immunologist. Be sure to take pictures in case you do not have visible symptoms at the time of the visit.

You can find a doctor specifically trained in Chronic Urticaria HERE. If you have found a doctor who is knowledgeable in Chronic Urticaria, please share in the comments.

Many have also found it helpful to see a functional medicine practitioner. A functional medicine practitioner can help you work out underlying issues and get your body back into balance. I have partnered with a functional medicine practitioner who specializes in hives to create a program specifically for chronic hives. You can find out more at UrticariaBlueprint.com

A good therapist can help you cope with your illness and address any past trauma that you need to process. This should be a priority for anyone with this condition.

Will Chronic Urticaria Go Away On It’s Own?

In some cases, it goes away within a year on its own. In about 50% of cases, it will continue in the long term. Some experience relapsing-remitting which means it comes and goes.

My doctor, and many other doctors, tell their patients that it is simply a waiting game and will most likely go away in 2-5 years. I wish they wouldn’t tell us that because, for some, it continues on for decades.

I spent a lot of years waiting and expecting it to go away and it was hard for me to accept that it wasn’t just going to vanish on its own as my doctor had predicted.

What is the Treatment for Chronic Urticaria?

There are many ways to treat chronic urticaria but no cure. We are all different and for many, it takes time to find the right treatment regimen. Here are just a few of the most common treatment options.

Medication

Your doctor may prescribe the following medications to help manage your symptoms.

H1 antihistamines
H2 antihistamines
Xolair
Immunosuppressants
Steroids– these should be used only for severe flares

Diet

Dietary changes have also helped some lessons their flares.

Some examples of elimination diets that are common in the chronic urticaria community:

Low histamine
AIP
Paleo (or anti-inflammatory)

These are just some examples of dietary changes that have helped some people. Some people also find that they have other underlying issues and may benefit from cutting back on FODMAP foods, salicylates, or oxalates.

Consult with a nutritionist or functional medicine practitioner for guidance. We are all unique and you may need a plan that is tailored to your needs.

I found that avoiding fermented foods and eating clean whole food anti-inflammatory diet was helpful in reducing the severity of my symptoms.

It’s important that you do not try to eliminate everything at once. Eating only chicken and rice every day will not help you in the long run as you are depleting your body of nutrients and causing more damage. Please do not do that to yourself.

Don’t do anything that will cause you excess stress. If you are eating a great diet but spending a lot of time stressing and obsessing over it, you are right back where you started. Stress is inflammatory and can cause flares as well.

If nothing else, you can try to avoid alcohol and fermented foods as these are very high in histamine and can cause flares.

Stress Management

It is important to learn some stress management techniques. Stress can cause your hives to flare and hives can cause a lot of stress.

Stress has been shown to increase inflammation and can cause mast cells to release more histamine. Just another reason to get some therapy and learn some good coping skills. Watch some YouTube videos about meditation, breathing techniques, or tapping (EFT).

Why Should Chronic Urticaria Patients Avoid NSAID Medications?

NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) are common medications taken over the counter or by prescription for pain or fever.

Some examples include

Motrin (Ibuprofen)
Naproxen
Diclofenac
Indomethacin
Aspirin

Chronic Urticaria patients are at higher risk for hypersensitivity to NSAIDs.

When I first received my diagnosis of Chronic Idiopathic Urticaria, my immunologist warned me not to take NSAID medications. I had been taking Motrin and Naproxen for years for my chronic joint pain. He was insistent, stating that CIU patients are at higher risk for adverse reactions including anaphylaxis, even if it has been taken without an adverse event in the past.

What Can I Take for Pain?

You should be able to safely take Tylenol and other acetaminophen products but of course, discuss with your physician. High doses of acetaminophen can cause liver damage, always follow instructions. Consult with your physician if you are not managing your pain well.

Here are some natural alternatives to NSAIDs that have been proven effective in relieving pain.

Please remember though that we are all different and what works for some may cause a reaction in you. Always monitor when starting new products or foods.

Can Chronic Urticaria Cause Anaphylaxis?

In rare cases, yes. Some do experience true anaphylaxis which is life-threatening and requires emergency intervention. Your allergist/immunologist should provide you with an EpiPen if you have a history of anaphylaxis.

If you have angioedema along with your hives, it can be quite frightening. Some have swollen tongues and feel as though they are going to suffocate. Often times this causes panic and that can result in feeling short of breath.

For some, feeling breathlessness seems to come with hive flares.

For the majority of patients, true anaphylaxis is unlikely although it does occur. If in doubt, always seek immediate care.

If you do not have anaphylaxis but are concerned about the severity of your flares, you can ask your doctor for an emergency supply of steroid treatment such as prednisone. Some are provided with an inhaler as well. You will be given instructions on how to take the medication in case of a severe flare.

Always notify your physician if you take your steroids on an emergency basis and always follow instructions. Steroids can be dangerous if taken improperly. Educate yourself on these medications when they are prescribed so you have a good understanding of when you need to take them.

Can Chronic Urticaria Cause Fatigue?

Fatigue is a common complaint among Chronic Urticaria patients. In one study of Chronic Urticaria patients, daytime fatigue was reported by 75% of the participants. There is no definitive evidence that this is related to the disease itself.

Chronic Urticaria is known to impact the quality of sleep and this of course can cause fatigue.

Many medications such as the antihistamines we take can cause drowsiness as well. Discuss with your doctor if you feel your medications are impacting your quality of life.

Personally, I feel drained when I have a flare, and sometimes before I even get hives. It would be interesting to see some research on this.

Do you experience this? Share in the comments.

Can Chronic Urticaria Lead to Cancer?

This is a scary thought and I would encourage you to not give this too much attention.

There are so many things that increase our chances of cancer. There is a correlation between CSU patients and higher cancer rates. There are many factors that could contribute to this.

Urticaria itself is an inflammatory process and we know that chronic inflammation can put you at higher risk for cancer.

Higher cancer rates have been noted in patients who take certain medications which may be prescribed for Chronic Urticaria.

Please don’t obsess over this.

You can mitigate your cancer risk in other ways:

Check out the EWG.org dirty dozen and clean fifteen lists and choose your produce accordingly.
Eat foods that are anti-inflammatory and high in antioxidants.
Reduce your use of toxic skin care products, cleaning products, and makeup.
Learn to meditate or do yoga on a regular basis to reduce stress.

All of these things will help reduce your risk of cancer.

I look at it this way: My disease (CSU) may increase my risk of cancer. However, my disease has also led me to live a healthier lifestyle, thus reducing my chances of cancer overall.

Adopt some of the tips above and take this one with a grain of salt.

Can Chronic Urticaria Lead to Death?

Chronic Urticaria itself is not a terminal disease.

Chronic Urticaria patients often struggle with depression and some contemplate suicide. This is why it really bothers me when physicians, family members, friends, colleagues, etc do not take it seriously.

This condition can have a massive impact on our lives and has the ability to drive us mad. I often wonder how many have actually gone through with those thoughts of self-harm? How many has Chronic Urticaria really killed?

I hope that doctors start to take this more seriously so we can prevent this kind of tragedy from happening. I admit that I had these kinds of thoughts in the first few years of dealing with this.

If you are feeling suicidal, please reach out to a therapist, a doctor, a trusted friend. You can call the suicide hotline any time of day or night or visit their website SuicidePreventionlifeline.org.

Here is the suicide hotline where you can talk to someone free of charge: 800-273-8255

You can learn more about the impact of chronic urticaria HERE.

What Causes Chronic Urticaria?

Chronic Urticaria is a disease of the Mast Cells that causes degranulation, releasing excess histamines and other inflammatory mediators. This is what causes the appearance of hives and angioedema. The cause of this is unknown but is likely autoimmune in nature for many. HERE is a good summary.

There are many contributing factors that can predispose us to these immune conditions. You can learn about root causes HERE.

What Triggers Chronic Urticaria?

We are all unique in what our particular triggers are.

Common triggers are

Stress
Infection
Inflammatory events such as surgery or sports injuries
Inflammatory foods
Exposure to environmental toxins
Medication reactions
Nutritional deficiency

How Common is Chronic Urticaria?

It is estimated that around 1% of the population has chronic urticaria. The true number may be higher as many are not properly diagnosed.

Some articles call it rare, others say it’s common. I suppose it’s all relative.

A lot of people confuse this with acute hives, which affects 15-20% of the population at some point in their lives.

This can be really frustrating as a chronic urticaria patient. Oftentimes people want to compare that time they had acute hives and think it’s the same thing.

How Can I Stop Itching?

While the term “Hell’s Itch” is already spoken for, this is how I like to describe the feeling of hives during a flare. Sometimes no matter how much you scratch it doesn’t go away and can even get worse.

It’s incredibly frustrating and sometimes it’s hard to find a solution.

The other frustrating thing is that everyone is different and may not respond to the same treatments.

For some, over the counter anti-itch meds may provide temporary relief:

Cortaid
Lidocaine
Benadryl creams
Calamine
Dermoplast

Here are some home remedies for relieving chronic hives.

You may have to experiment with different treatments and that’s okay. Try not to get too frustrated and know that we are all different but if you are persistent you can find something that works for you.

Is Chronic Urticaria Autoimmune?

Yes, in many cases. You can read about the leading theories of what causes Chronic Urticaria HERE.

It’s interesting to note that many who have Chronic Urticaria have co-diseases that are autoimmune in nature.

You can read about why women are at high risk for autoimmune diseases like Chronic Urticaria HERE.

Can Chronic Urticaria Cause Weight Gain?

Have you noticed your pants getting tighter?

Although Chronic Urticaria itself does not contribute to weight gain (that we know of), there are many other factors at play here.

Medication side effects may be the cause of your increased weight, particularly if you take steroids.

Antihistamines have also been shown to contribute to weight gain.

Add in the lack of sleep, resulting in exhaustion, and depression and we have a perfect recipe for packing on some extra pounds.

What are the Symptoms of Chronic Urticaria?

Many patients with Chronic Urticaria have other symptoms that are seemingly unrelated, yet quite common among this group. According to this study, approximately 2/3 of participants reported additional symptoms.

In addition to hives and angioedema, complaints of those with Chronic Urticaria patients also include:

Joint pain or swelling
Headache
Fatigue
Wheezing or feeling breathlessness
Gastrointestinal complaints
Heart palpitations

If you ask Google, or even a doctor, this question you will most likely see many state that angioedema and hives are the only symptoms of Chronic Urticaria.

If you ask a group of Chronic Urticaria patients, you will get a different answer. I polled the Facebook Support Group for Women with Chronic Urticaria and the results were similar to the study above.

I told my doctor of all of the above symptoms and was treated as a psychiatric case.

Hopefully, this will be researched further so we will be taken more seriously.

Can Chronic Hives be Caused by COVID-19?

Possibly, but there aren’t any studies that I was able to find.

Urticaria is the most common skin symptom of patients with COVID-19. For some, this will continue for weeks or months after the infection has subsided.

Chronic Urticaria can be triggered by an infection and COVID-19 is known to impact the mast cells and cause hyper-inflammation.

It’s important to remember that any immune response can trigger an autoimmune response. This goes for both infections, and vaccines.

Can I Get The COVID-19 Vaccine With Chronic Urticaria?

This is a very personal and case-by-case choice. It’s definitely a conversation you should have with the doctor who is treating your condition. Don’t be afraid to voice your concerns.

There is no consensus on this. Some advise to wait until you are not flaring, some have prescribed extra medications to take prior to receiving the vaccine, others have advised to get it without taking any other measures, and some have advised not to take it at all.

You are unique and your doctor will take your particular situation into consideration when making the recommendation.

Something to consider is that a COVID-19 infection will likely cause you to flare as well many other potential symptoms and can lead to complications.. It is a risk vs benefit decision.

Whatever you choose, remember that you have the right to do what you feel is best for you. Don’t let anyone bully you either way.

Like everything in the chronic urticaria community, we all react differently and we don’t know our particular reaction until it happens.

This condition makes our decision more complicated than the average person’s.

What Tests Should I Ask My Doctor to Order?

Many doctors do not test for these important factors and you may need to ask. They may do basic lab work such as complete blood cell (CBC) count with differential, ESR and/or C-reactive protein (CRP), and liver enzymes.

Anemia can contribute to chronic urticaria. Basic blood work will show if you are anemic.

H.Pylori is a fairly common and treatable gut bacteria that can contribute to hives. You will most likely have to ask about testing.

Some doctors will be open to requests but others will not. Be sure to tell your doctor if autoimmune conditions run in your family.

A functional medicine doctor will do a full work-up including food sensitivities, micro-biome, hormones, and vitamin deficiencies but you often have to pay out of pocket.

Additional testing to ask your doctor to consider:

ANA (AntiNuclear Antibodies)

This tests for antinuclear antibodies in your blood which can help diagnose some autoimmune disorders such as:

There is a higher prevalence of autoimmune diseases in Chronic Urticaria patients.

Full thyroid panel with antibodies.

Why? Because many with chronic hives have Hashimoto’s thyroiditis or other thyroid conditions that may not have been diagnosed. Some have experienced an improvement in their hives with treatment.

Antibody levels may be high before the damage to your thyroid is advanced enough to cause a change in your other lab values.

Vitamin D level

Studies show that vitamin D deficiency is very common, especially in the chronic urticaria community. Low vitamin D levels can cause many issues and it’s important to know your level and treat any deficiencies.

This study showed an improvement in the severity of chronic urticaria symptoms by when supplementing with high doses of Vitamin D.

You can read more about vitamin D and chronic hives HERE

Will Chronic Urticaria Affect My Pregnancy?

For the majority of patients, the answer is no. However, your pregnancy may affect your hives.

Many women experience remission during pregnancy, as much as 51% according to one study.

Some women have an increase in symptoms, particularly in the third trimester.

You can read the study summary HERE.

There is no evidence of harm to the fetus in Chronic Urticaria women that I was able to find.

Learn more about medication safety during pregnancy HERE.

Is There a Cure For Chronic Urticaria?

There is no cure but you can be hive-free with the right treatment plan.

For some, it will go away as mysteriously as it came. Others may need medication for decades to manage symptoms.

Research is being done in this area thanks to the UCare Network.

Functional medicine can help you get your body back into balance and put your symptoms into remission. The Urticaria Blueprint program was created by a specialized team of functional medicine practitioners specifically to address urticaria. Check it out HERE.

Where Can I Find Support for Chronic Urticaria?

There are various support groups online including forums and Facebook groups. Thrive with Hives has a support group for women on Facebook. We also have a newly formed group that is open to anyone. Search Chronic Urticaria support group and you will find many options.

It’s important to have personal support as well. This means family members, friends, or a good therapist. Many find that those closest to them do not understand and a therapist and online support groups can be invaluable.

What Can I Do If My Friends and Family Aren’t Taking Me Seriously?

I wrote this post about what I want people to know about Chronic Urticaria that you can share if you’d like. All we can do is educate them. You could share this page with them or share some research articles.

If you are seeing a therapist you can discuss this with them as well. Maybe a family session would be helpful.

If you would like to write your own post to contribute to Thrive with Hives you can remain anonymous or share your name. If this interests you, send me an email at Sarah@ThriveWithHives.com subject: Guest Post.

This is a platform to share your voice and have your story heard.

Chronic Urticaria Resources

Here are some additional resources that I have found helpful. I will add to the list as I come across more. Please let me know if you have a resource that should be added.

Work with a functional medicine practitioner who specializes in hives

Watch this informative and validating interview with a chronic urticaria expert

Chronic Urticaria Podcast

15 Natural remedies for hives

Navigating the workplace with Chronic Urticaria

Natural NSAID Alternatives for pain management

Learn about low-histamine diet for hives

Vitamin D and Chronic Urticaria

Get PAID to participate in research they will contact you when a study is available

Chronic Urticaria Support Group for Women

Thrive with Hives Chronic Urticaria Community