International Chronic Urticaria Society FAQ

International Chronic Urticaria Society FAQ

Frequently Asked Questions

• What is chronic urticaria? (CU or CIU)?
• How long does CU last?
• What produces hives?
• What causes CU?
• How can I figure out the cause of my CU?
• How do I find out if it's autoimmune?
• What if I am not autoimmune?
• How can CU be controlled?
• What are H1 and H2?
• What other treatments are there?
• Will I have to stay on these medications forever?
• What can I do for immediate relief of itching?
• Are there any natural remedies for CU?
• How can I help manage my own care?
• How can I live with this?

What is chronic urticaria (CU or CIU)?

Chronic urticaria (CU) is a type of hives, also called nettle rash, that lasts for more than six weeks. Shorter bouts of hives are considered acute urticaria, and are treated differently.

Urticaria can be a manifestation of many conditions and illnesses, rather than one illness.

CIU stands for chronic idiopathic urticaria. The term idiopathic simply means 'of unknown cause'. The diagnosis is often made by ruling out known causes, but some causes, like mastocytosis, cannot absolutely be ruled out. How much your physician rules out depends on his or her personal diagnostic talent, knowledge and willingness to test. 
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How long does CU last?

There's no easy answer to this question. Some people have it for a year or so, after which it goes away, never to return. Some people have remissions of as much as thirty years between episodes. Some people suffer from it their whole lives. The answer also lies in finding out possible causes. Some people are lucky enough to discover and treat the underlying cause well enough to make the hives go away. 
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What produces hives?

Mast cell degranulation is the mechanism behind hives. In simple terms, certain little white blood cells are going bonkers and firing histamine. Mast cells fire in response to antigens (invaders, real or perceived) that come into your body either by contact (skin), inhalation or digestion. Antigens are also produced within the body by other factors, such as inflammation or systemic illnesses such as cancer, thyroid disease or lupus.

Besides histamine, mast cells also fire heparin, chrondroitin sulfates, neutral proteases, acid hydrolases and other enzymes. On the surface of these mast cells are little receptors for IgE (immunoglobulin E antibody). Think Velcro®. When an antigen comes into the body it "sticks" to the IgE receptors. When the mast cell gets loaded it starts firing its weapons(degranulating) and it encourages other mast cells as well as other inflammatory cells (basophils and leukotrienes) to fire also.

As the mast cells fire, they release histamine. Histamine and other mast cell byproducts cause
vasodilation (where the capillaries increase in diameter), which in turn causes the blood vessels to leak fluid into surrounding tissues. The histamine infusion into the tissues produces hives. 
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What causes CU?

CU can be caused by a great many different things. Generally, chronic urticaria is either autoimmune (a primary autoimmune disease all its own) or a symptom of something, it is just a matter of finding what that something is. Approximately half of CU cases are autoimmune.

CU may be related to an autoimmune problem such as lupus, thyroid disease, or multiple sclerosis. It may be an allergic reaction to something (although if the hives are chronic this is unlikely). If you have had hives for longer than six weeks, you may not discover the cause. This doesn't mean you should stop looking for the cause, but knowing this can help you focus on managing your symptoms and living with the condition on a daily basis. 
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How can I figure out the cause of my CU?

If you want to pursue finding the cause, keep in mind it may take a long time to pinpoint, and it probably won't be easy to do. And you may never find the underlying cause. You will have to be your own detective and advocate to find it. If it means changing doctors, so be it. Listen to your body and keep a detailed diary of what goes into your body, what you are exposed to, and what your symptoms are like each day. A pattern may emerge. Several people with mastocytosis/mast cell activation syndrome have also reported that their symptoms began with an 'event' or trauma, like that seen in autoimmunity. 
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How do I find out if it's autoimmune?

One of the first tests you should have is something called the autologous serum skin test (ASST). This test is still not widely available, so it may take some hunting around to find a local clinic or hospital that offers the test. The ASST involves taking a sample of your blood, spinning it down in a centrifuge to separate the serum, and then injecting the serum back into your arm. A wheal/flare response to the injection is considered positive for autoimmune CU.

Some things many people with autoimmune disease have in common:

• For women, a worsening of symptoms during periods
• Remissions during pregnancy
• Development of other autoimmune diseases
• Family history of various autoimmune problems (one family member may have rheumatoid arthritis, another may have thyroid disease, still another may have endometriosis)
• Onset of symptoms with an event or trauma such as accident, illness, surgery, or infection within approximately 6 months—something that kicks the immune system into high gear.

If you've experienced any of these, you may indeed have autoimmune CU, and this warrants further investigation. 
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What if I am not autoimmune?

Here are a few things to consider:

• Can you take aspirin or other NSAIDs (non-steroidal anti-inflammatory drugs)? If not, you may be salicylate sensitive. Salicylates are the active ingredient in aspirin, and are found in all plant matter to some extent (fruits, vegetables, herbal supplements, etc). If you find that taking aspirin makes your hives worse, you may have discovered your cause. This is also true if you cannot tolerate other NSAIDs such as Ibuprofen or Aleve, because they are cross-reactive with salicylates. A low salicylate diet may help.
• A few people have found that a yeast-elimination program (diet and medications) has helped reduce their flares.
• You may be sensitive to additives or dyes or preservatives. Again, you have to be your own detective. Pay attention to what is happening, and your body may give you clues.
• Have you had a complete thyroid workup? It seems to be quite common that people with several autoimmune diseases also have thyroid trouble. If you have a thyroid disorder, you may find that the CU improves with appropriate thyroid medications.
• Have you ever had a root canal done? Some people in our group have had CU go away after being treated for infected root canalled teeth.
• Do you have any other possible sources of infection? Potential culprits are kidney infections, sinus infections and gallbladder infection.
• Hepatitis B and C have also been implicated in CU.
• Have you been tested for other autoimmune conditions? While the majority of autoimmune CU is a primary illness, hives can also be a symptom of some other autoimmune diseases, such as lupus. The most common screening test is ANA, which looks for some specific autoimmune diseases, such as lupus. However, it is possible to have a negative ANA and still be autoimmune. A diagnosis is made based on a combination of symptoms and lab results. One excellent starting place to learn more about autoimmune diseases is the American Autoimmune Related Diseases Association website.
• Do you have any other symptoms besides hiving? Stomach problems, slow healing, sinus problems, headaches, normally low temperature (less than 98) or low blood pressure, anything at all, whether you think it is related or not? The more you know about your symptoms and the medications you are currently taking, the better able you will be to manage your CU.
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How can CU be controlled?

The principal approach is to control mast cells, by controlling either the IgE stimulation or the histamine being leaked. Granted, this treats the symptom and not the cause, but until a cause is determined, it is in your best interest to try to gain some control over the symptoms. It's a matter of working with your doctor to find the right combination of medications for you.

Because skin contains receptors for H1 and H2, treatment frequently involves taking both an H1 and H2 antihistamine.

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What are H1 and H2?

Mast cells release 3 known types of histamine, H1, H2, H3. It is believed there are also H4 and H5 histamine. Skin has receptors at least for H1 and H2. Airways have receptors for H1, the gastrointestinal (GI) tract has receptors for H2, and the brain is believed to have H3
receptors.

The H1 drugs are those commonly thought of as antihistamines, such as Zyrtec, Benadryl, Claritin, Allegra, and Atarax. The H2's are normally thought of as ulcer medications, but are actually histamine 2 blockers. Zantac, Pepcid, Axid and Tagamet are the most common. 
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What other treatments are there?

Some people also benefit from the tricyclic antidepressant Doxepin. For CU, it is prescribed at a much lower dose than for depression, and works as both an H1 and H2 blocker.

Still others find that drugs like Gastrocrom, Zyflo and Accolate help. Gastrocrom can also be made into a cream that helps the itching for many people.

Ephedrine sulphate or inhaled epinephrine can help some symptoms, especially for those with mast cell disease. Inhaled epi (Primatene Mist) is also used by some shockers as a first line of defense during anaphylaxis.

Another drug some people respond to is Procardia (which is actually a heart medication).

If your hives are due to autoimmunity, immunosuppressant drugs such as colchicine or Imuran (Azathioprine) may help.

And if you have ever experienced symptoms of anaphylatic shock (especially drop in blood pressure, throat swelling/tightness, trouble breathing), an Epipen® (emergency shot of epinephrine)—best to have at least two—is a MUST. 
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Will I have to stay on these medications forever?

You may find that over time, the drugs you are taking aren't as effective. Talk to your doctor about switching to something else, or changing the combinations you are taking. 
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What can I do for immediate relief of itching?

Here is a list of a few things that may help you. Before you slather your whole body with any of these, test it on a small area of skin away from your face, preferably for about three days. Many people are more reactive to any new substance when they are in a flare, so be cautious!

• Cromolyn cream is something you can make yourself using any form of cromolyn (Gastrocrom, Nasalcrom, Intal or cromolyn eyedrops). The recipe for it was developed by a nurse and pharmacist who are both mastocytosis sufferers, and many people swear by it.
• In a pinch, you can spray some Nasalcrom directly on an especially itchy spot of skin for instant relief.
• MSM lotion or cream works very well for the itching for some people.
• Other lotions and creams that have helped many include Sarna™ Lotion, Aveeno™ Lotion in the green bottle, Aveeno™ Oatmeal Bath, tea tree gel, and several other lotions which contain menthol.
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Are there any natural remedies for CU?

A number of people with CU have experienced relief using a variety of natural treatments. the list of possible treatments and remedies is quite long and results have been variable. Remember that many people with CU are very sensitive to certain chemicals, such as salicylates, and some of these chemicals may be found in natural remedies. Always proceed with caution when trying any new treatment, and collaborate with your medical professional.

Note: This post to the Urticaria Yahoo group reviews several possibilities. (You must be a member of the group to open this link. )

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How can I help manage my own care?

Every time you see your doctor, ask for a photocopy of every test and his notes. This is your right as a patient. If you have to change doctors, get a second opinion, or try to keep the facts straight, having your own file will help.

If you find a medical journal article about a kind of hiving you think might be the same as yours, copy it and take it to your doctor. He has to include it in your medical file at your request—another of your rights as a patient. 
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How can I live with this?

Never give up. You are going to be either your best friend or your worst enemy in this thing. Sometimes that choice will be made daily, hourly or by the minute. And take a look at our Useful Informationpages for some practical help.

The ICUS email list is a wonderful support group where you will find many others who may be able to help and will certainly listen to your joys and sorrows.