09/22/2000

Hives: What Causes Them?

My nephew has been through every medical test imaginable in search of a cause for severe, chronic hives that appear every spring, make him miserable until fall and disappear through the winter. The itching and swelling is so bad that he takes numerous medications for relief -- just so he can sleep! So far, no cause has been found. The hives appeared in adulthood, "out of the blue," with no apparent antecedent. His condition remains a mystery.

About a month ago I received a letter, also "out of the blue," from Kate Walton, a woman who suffers from a similar condition. She told me that it has a name - Chronic Urticaria (CU) -- and that she belongs to a support group comprised of other people who suffer from CU. She asked me to write about it, hoping that media attention might lead to sharing of knowledge, more attention from the medical community and, eventually, to a cure for some, if not all people who have the same or similar conditions.

What follows is a summary of Kate's letter, letters from people who belong to the CU support group and sources of information about CU.

Dear Beth,

I am a 37 year old woman who has Chronic Urticaria (hives). I am currently on an E-mail support group of about 300 participants. CU has gone undiagnosed, left to treating the symptoms and being shuffled around from doctor to doctor. This is a real disease that afflicts real people. As for treating the symptoms -- antihistamines, steroids and antacids are some of the medications prescribed. Steroid usage can be quite dangerous.

Many CU sufferers have taken steroids for years and are now sorry they did. They are experiencing bone loss, teeth loss, weight gain, mood swings and other symptoms.

Antihistamines, the ones that actually work for hives, cause severe drowsiness, to the point of not functioning during the day. Many people with CU suffer from shock, where the blood pressure drops and the throat swells, causing difficulty breathing. Edema (swelling) is also a side effect of hives, as is the depression one goes through when coping with this disease.

We do our own research and ask for specific tests that should be done, often without help from our doctors. Still, there are very few of us that actually find the cause. In my opinion and the opinion of the support group, medical professionals need to take on a more active role and more medical research needs to be done to find a cause. CU is far more than a few welts. It changes our quality of life drastically. We need to find medical professional who are willing to speak openly about this illness and help us do something about it.

We need help from the media, not a debate. We need to tell our side of the story. If it were not for the families in Lyme, CT who told their story, Lyme disease would be another undiagnosed collection of mysterious symptoms.

Sincerely,
Kate Walton
Kate444@snet.net

***

Dear Beth,

Here is my story, or should I say nightmare?

December 1999 I went to Tenerife on holiday. This is when it all started. My scalp became very hot and itchy, (no signs of hives). When I got back to the UK, hives appeared on my face, so I went straight to my GP who presribed Claritin (antihistamine) and Prednisolone (steroid). The hives cleared up straight away.

Within a couple of days the hives were back, worse than ever, all over my body, even on my eyelids! My GP referred me to a dermatologist who told me I had CU. He prescribed more Prednisolone, Zirtec, Dimotane LA and Tagamet. After doing some research and finding this support group, I began to learn a lot more about this disease and took some of the information to the dermatologist to ask for tests. I mentioned the Zantac Zirtec combo. I was disgusted with his responce. He said that there are no blood tests to do and told me I was already taking Zantac -- it just had another name. This was a lie because I was not taking Zantac at all. He more or less shoved me out his room and shut the door. I felt so alone, worried, scared and depressed.

The Prednisolone made me put on two-and-a-half stone. I had to buy all new elasticized clothes and began to hate myself, crying myself to sleep at night. The antihistamines made me so drowsy that I started to fall asleep at work every day. I couldn't concentrate or cope, so I decided to pay and go private. I paid £90 to see a consultant. He gladly arranged for me to have blood tests done. The RAST came up abnormal and so did another test for inflammation. Also my anti-histamines have been changed to Telfast 180 and Ranatidine (Zantac). I am now down to just 5mg per day of Prednisolone along with the antihistamines. I feel there may be hope yet to get off the steroids.

The last 7 months have been the worst time of my life. I feel like part of me has died. I am no longer this bubbly outgoing 24-year-old. I have become depressed and tired, with no motivation. This group and my family have given me a lot of reasons to keep my chin up. There is so much support from this group. It really helps to write down what is going on and to read all of the messages from the group. I hope we find something to cure this disease.

-- Dawn

***

Dear Beth,

One of the outcomes of a chronic condition such as urticria is the interference with lifestyle. For many, the condition is an irritant. The individual learns what triggers the symptoms and modifies her/his behavior accordingly. Activities such as hiking or running may be impossible, if they precipitate uncontrollable itching and hives for someone with cholinergic urticaria. Canoeing, rafting or swimming may be impossible for the individual with severe cold urticaria. For those whose symptoms are severe or life-threatening, the potential for accidentally finding themselves in situations that produce the urticaria can be a major source of fear and anxiety.

Another issue affecting the life of a person with urticaria is the discovery that others do not understand (or have not heard of) the condition. Many health care providers are not familiar with, and do not screen for, the physical urticarias. In the larger picture of overall health care, these problems are often dismissed as minor annoyances without due consideration for diagnosis and treatment. However, worse than health care providers' lack of interest and knowledge may be the response of the individual's family, friends or acquaintances, who are likely to be much less aware of the condition than health care providers. The fact that the majority of urticaria sufferers are female produces interesting speculation regarding the possibility that urticarial symptoms may be dismissed more readily than if the symptoms were experienced by men.

As is true of other conditions about which little is known, it can be difficult for health care providers to help a person whose symptoms do not fit into a recognizable framework. If there is not a familiar explanation or ready diagnosis, it is often too easy for a health care provider, as well as a lay person, to dismiss the symptoms and the impact they may have on someone's life.

***

Dear Beth,

I am the web master and founder of ICUS (International Chronic Urticaria Society).

ICUS is more than a medical information site; it is a place for refuge. It is a society for service and support for all that need its help. No advertising is published via the site. We are there to help each other and are seeking new means of sharing information worldwide. Contact me for information.

-- Phil
Email: frankford@brick.net

***

Dear Beth,

Here is my painful story of severe urticaria.

In August of 1998 I developed a red itchy rash on my chest. Just a few months prior to this, I ended a tumultuous five-year relationship with a man who was verbally abusive. Additionally, my 17-year-old daughter began a two-year saga of lying and stealing that led to a prison sentence. I work for a large insurance company and, as a manager, assumed increased job responsibilities. All this put me under considerable stress. Nevertheless, I was enjoying the single life and the status my job gave me, not realizing my life was about to change dramatically. In November of that year, over Thanksgiving weekend, I went on a ski trip with a male partner. It turned out to be a very stressful weekend. The rash went from my chest to my whole body. I went to an Emergency Care clinic where I was given a steroid shot. The condition improved for a short time.

In December it came back. I went to a dermatologist who treated me with more steroids. My symptoms persisted but were manageable. Later in December my rash worsened. I went to another dermatologist who put me on Atarax and Kenalog. Again, it worked for a little while. Then the emergency room visits started. In January, 1999 the itching became unbearable, and I went to the emergency room at a local hospital where I was given more steroids. After that the dermatologist put me back on Prednisone daily for seven days and I was also given Kenalog.

In late January we tried PUVA (light treatments). It made the itching worse. During this time my work responsibilities increased. I was traveling a lot, and my daughter was getting into more trouble. My personal life was intense. From February through May of 1999 a combination of light treatments, topical lotions and Atarax were used. In June the rash came back with a vengeance. I was given Kenalog and Zyrtex daily with Clonazepman for sleep and Prednisone for five days. During the next four months the horrible itching was off and on. It never really presented itself in a full-blown rash or hives because my system was so suppressed from all the steroids. It was mostly a burning from the inside of my body out. Stress always exacerbated it.

I was scheduled for surgery at the end of October. Approximately one week before the surgery, I was visiting my boyfriend in San Francisco and had an extreme attack. I could feel my skin itch and burn just beneath the surface for approximately two days. We attended a concert one evening, and I became so uncomfortable I had to be taken to the emergency room. I was given Solumedrol and benydryl push. I was also given Prednisone to take daily until my surgery, which took place on schedule. The surgery went very well. However, due to the high dose of Prednisone I was given while in California it was necessary to be give me Solu-Medrol IV piggyback over 30 minutes post surgery. I felt like I was being Prednisoned to death!

In December my condition worsened, the itching was horrible, I was trying to work, and the effects of all the steroids were really beginning to show. I couldn't sleep, my ability to concentrate was deteriorating and during all this I was trying to maintain a long distance relationship. The dermatologist put me back on Prednisone. I'll admit I was terrible about taking the Prednisone as prescribed. I'd feel some relief and the side effects of the Prednisone were horrible, so I quit taking it, sometimes in the middle of the dosepack. I was also on several antihistamines, and I would quit taking those because I could not function at work. I had an MRI scan and everything was fine.

During this time my legs became intermittently inflamed and swollen. Blood work was ordered and nothing showed.

In mid December I was sent to the top allergist in the state. He did some food allergy testing and nothing showed, because I was so suppressed from the steroids. I had been on Doxepin that the dermatologist had me try with very little success. The allergist prescribed Zyrtex and Zantac, and told me I was just stressed. I went to San Francisco to visit my boyfriend in January and while there had another severe attack. My skin was burning and itching uncontrollably. I went to the emergency room where I was given Prednisone again. In February, 2000, I was sent to the Mayo clinic. I was in terrible shape and again I was put on a Prednisone taper and Prozac. I could not sleep, had incredible headaches, was exhausted and the itching and burning was much, much worse. At the Mayo Clinic I was evaluated and tested by an allergist, dermatologist and a psychiatrist. The summation of my weeklong visit and many tests was basically that I had been "over Prednisoned," and I was sent back home.

I was miserable. I turned to alternative medicine. I went to see an acupuncturist, network spinal chiropractic, a nutritionist and joined a healing group. I was sliding downhill fast. In April I had another horrible attack and ended up in the emergency ward again where I was given Prednisone. Nothing worked; I felt my life slipping out of my hands. At the end of April I could do nothing except lie in bed and take sleeping pills to keep me out of my misery. I was trying every homeopathic remedy suggested. As a last resort, and what I truly think saved my life, my nutritionist sent me to CHIPSA hospital in Mexico. CHIPSA's main focus is terminal cancer, however they also take chronic disease. I hardly remember going down there I was so near the end of my life. I truly feel I was barely connected to the earth. I spent seven agonizing weeks at CHIPSA.

Their program is intense detoxification through a variety of treatments. I can't begin to tell you how much courage it took to do this program. They said that detoxing from Prednisone was worse than detoxing from cocaine. The pain and trauma that I endured is more than I can even write about. However, the wonderful part is that I did detox from the Prednisone. I think this alone saved my life.

As for the rest of the program, I'm not sure that it helped find the source or improved my original condition. However it has opened the doors to at least show that my eosinophil count is way up, so testing now shows what is happening in my body without all the Prednisone. In other words, my immune system is not so suppressed that nothing shows. Also while in Mexico I had all my mercury fillings replaced with amalgams. I don't know if that will help, but I hope it will.

I'm currently taking Zyrtec and Zileuton during the day and Atarax and Trazodone at night. I hate taking these drugs, but they are at least keeping the horrible attacks under control. When I say attacks, this is what happens. I start to itch in a certain area. If I start to scratch it spreads uncontrollably all over my body. I scratch until I bleed. I feel like a caged dog that keeps biting itself. My skin then hurts for days. Showers make me itch, as do heat, cold and any kind of anxiety. While this has been a horrific experience, it has also led me to some incredible insights about myself. I am truly learning what is important in life. In the past year I have spent over $65,000 dollars. This is my own money and does not include what my insurance has paid. I had to sell my house, and I've lost a relationship that was very dear to me. However, I am discovering who I really am and what I can offer to the universe. I hope my story helps someone and I welcome any insights or help anyone can give me.

-- Cynthia

Links

Support Group for people with Chronic Urtacaria (CU) (put the word "urticaria" in the search window)

AllergyWeb information about Chronic Urticaria

Urticaria

More links about Urticaria

Please send questions or comments to bbruno@snet.net.