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What Is Chronic Idiopathic Urticaria?

Using oatmeal-based lotions may help to alleviate the symptoms of chronic idiopathic urticaria.
Hives that appear for no known reason and that last for an extended period of time are called chronic idiopathic urticaria.
Anti-itch cream can be applied to alleviate the symptoms of hives.
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  • Last Modified Date: 22 August 2014
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Chronic idiopathic urticaria are hives with no known cause that last for an extended period of time. They can be painful and demoralizing, causing wheals or itching almost daily for six weeks or more. The word "idiopathic" means the condition stems from an unknown cause. Hives are usually the result of some kind of allergic reaction and the body is, in effect, seeing something as an enemy and reacting to dispel the intruder.

This disorder often baffles dermatologists, allergists, and other medical professionals. Without a known cause, it is nearly impossible to prescribe an effective treatment, which means that the patient continues to suffer. The skin often becomes scarred and otherwise damaged from the wheals and scratching. This condition can cause secondary depression because the sufferer is continually miserable, embarrassed by his skin, and pessimistic about ever being free from the disorder.

There have been some advances in the diagnosis and treatment of chronic idiopathic urticaria, however. Many medical professionals now believe this disorder is due to an underlying autoimmune disorder, such as lupus, in between 30 and 50% of those who suffer from it. The task then becomes to find out which autoimmune disease may be causing the hives and to treat that disease. In autoimmune disease, the body attacks itself, and so hives can be considered a logical symptom. Other types of urticaria can occur along with chronic ones, and since the treatments may be very different for each type, curing the patient can become difficult.

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Many people with chronic idiopathic urticaria often try to eliminate sources of allergens from their lives. They may wash their clothes in a natural detergent, use only fragrance-free products, and try to eliminate food allergies as a possible cause for their condition. As long as this does not cause malnutrition, changing the diet may be helpful. Patients should use caution in trying natural or homeopathic remedies, however, because a compromised immune system could react badly to the compounds used in these preparations. As with hives caused by a known allergy, oatmeal baths and oatmeal-based lotions may provide some relief, without causing adverse reactions.

Those who suffer from chronic skin problems deserve sympathy and understanding. Their condition may be debilitating, and they may be unable to work or lead what most people would consider a normal life. Any help in making their lives a bit easier would probably be appreciated — even if it is just a better understanding of their condition.

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anon954257
Post 109

I had CIU about 10 years ago and it lasted for two years. I remember it starting after I went outdoors and had a reaction to something I touched. After that I broke out in hives all over my body a few times a day. When I panicked it got worse.

After seeing a lot of doctors, I went to a specialist in CIU in NJ (I forgot his name) who just told me to take antihistamines until it went away. He found the right cocktail for me: Doxepin, Zyrtec, Claritin and Singulair. At first it made me tired, but I got used to it. Then after two years it just went away. Once I realized it was not life threatening, and I took the right medicines, it became manageable.

The worst part was the first few doctors who had me taking steroids and Prozac and other stuff that made me worse.

anon947524
Post 108

I received a TB test and six hours later had swollen, severely red welts over my entire body and severe itching. My face, lips, feet and extremities were swollen and purple. My eyes were swollen closed, my throat swelled and I had difficulty swallowing and eating and taking pills.

A surgeon completed a knee revision the week before. The staff disregarded my complaints and concerns for three days, until my doctor said it was a severe histamine reaction. But nearly two months later, I am still experiencing welts and itching. I do see a correlation to diet as I am celiac, but I am having flares, which I have never experienced before.

I am deeply saddened reading testimonials of many suffering long term. I suspect we are poisoned and the chemicals in food, air, water have weakened our bodies for an epidemic of CIU!

anon945787
Post 107

I have been struggling with CIU since about 2001, when I was 11. I had a brief and relatively harmless outbreak, after which the hives went away until 2005. And since 2005, I have been periodically getting them almost every year.

Though I have only been keeping track of this for my last three breakouts, these last three spells have followed a cold or a stomach virus, leading me to conclude that it must be auto-immune induced for me.

No medicines have helped me curb the symptoms, and although I have fewer problems with swelling, I also struggle with being in public when I have hives, especially on my face.

The only thing I have come up with that has helped me fight the symptoms a little is this.

Because the hives are caused by a release of histamine into the mast cells, what I try to do is never let my body build up a good amount of histamine. I don't know if this works for all ICU folks or just us cholinergic ones (exercise/heat-induced urticaria), but what I do now is exercise vigorously for at least 30 minutes a day. I always do this in the evening, because afterward I get a histamine release, break out in hives, and am usually fairly free of hives the next morning and can generally about my day with little concern.

So for me, the key is to 1) release histamine regularly (for me, it's by exercising, sweating, and raising my body temperature) and 2) staying away from foods high in histamine (especially old meats).

I hope this helps at least some of you. God bless you guys. Thoughts and prayers with you.

anon944270
Post 106

I have had ICU for 35 years. The only thing that works for me is Atarax (hydroxyzine). Everything else is like eating Pez candy. The drug doesn't affect my life -- I guess because I've been taking it for so long. If I don't take it, my body swells up. This will never go away but it is manageable. I take my drug PRN. I can tell when my drug is wearing off. My skin starts to get hot before the itching starts, then my welts start and my fingers and toes will itch so bad and swell. I keep my pills everywhere I go. I swear by atarax.

anon940827
Post 105

@anon933138 for post 104: look up "exercise induced anaphylaxis". It causes reactions such as hives, angiodema or anaphylaxis only when you exercise and eat certain foods you are allergic to are combined within a certain time frame.

anon933138
Post 104

Well all, add me to the list. My hives started one day except I know exactly what I was doing when they occurred and since then I have been to several doctors and looked at as if I'm nuts. Even had allergy test done(or most common allergens).

I will tell you that my experience with this condition had not been as bad as most of you. Allegra once a day 180mg has been working for the past month and hopefully will continue to work. I noticed I can go a whole day without eating and never break out. Doctor says I'm overthinking problem since I'm only allergic to food allergies on the very low side of the scale. Basically not enough to cause a reaction.

Two years ago, I started biking because I was told to lose weight. I ate health food bars, I switched to soy milk and fruit drinks, I wore spandex to help with sweat when exercising. My doctor has shot down everything but the exercise, but if exercise was the problem then why do I get hives when not exercising? The doctor couldn't answer me.

I've narrowed it down (for me) to be air pollution and or a combination of my food allergies all hitting my system at once or an allergy to a food preservative.

These are the only things in common from day one of my attacks to now. Good luck all.

anon356623
Post 102

I think dermatologists are a joke. I went to a dermatologist who referred me to specialist (skin doctor). They treat the symptom not what causes it and they don't seem to care at all.

When I explained that this condition that never existed before until after my landlord sprayed the apartment with a toxic chemical that has actually caused people to break out in hives, he couldn't have cared less. What's the point of giving me zyrtech and alleve if I'm living in the toxic apartment or if I'm using the allergen that is causing the hives? It makes no sense. If there's another type of doctor other than a dermatologist please let me know. Someone suggested an infectious disease doctor.

anon352385
Post 101

I had chronic urticaria for 19 years. The doctors figured it was autoimmune response to something. They went away when I underwent chemotherapy for Lymphoma.

anon349588
Post 100

Just thought I'd try to help by pointing out that a silent epidemic is currently being discovered relating tick bites to meat and possibly other allergies (such as wheat, that ticks come in contact with).

Ticks are much more common than most people realize. Many people are finding that their hives are disappearing as they avoid contact with ticks for months and sometimes years, but that they return when eating the same foods after being bitten again. Look up ticks and meat allergies for all the info. Hope this helps many of you.

FryingScot
Post 98

I have been reading lately about people having success using unpasteurized apple cider vinegar. Even though it is acidic, it will actually turn your body more alkaline. I am not sure if there is a clear and tested amount, but try searching for it yourselves.

anon338078
Post 96

I too suffer with CIU, which started when I had a general anaesthetic last year. It started with just a few hives now and again, but gradually became worse and worse and spread all over my body.

I sometimes get them in my mouth which is so painful, I cannot eat at all. I have changed my diet and cut out food and drink that seem to trigger it, but sometimes getting a headache can start it!

I also feel so frustrated that the doctor and skin specialist just seem disinterested. Before I even open my eyes, I feel my skin for lumps. On bad days, I will not go out or am totally covered up. I put on a brave face but it is slowly getting me down more and more. People are sympathetic, but do not realise the effect it has on you.

I am on fexofenadine hydochloride 180 mg 2 daily, Cetirizine hydrochloride 10 mg 1 daily, Atarax 25 mg, prednisolone steroids 5 mg 6 daily plus have Aqueous cream. This used to keep it at bay but now these aren't working and my doctor is considering adding another to the mix. I just got told it will be here for at least seven years.

The only thing that seemed to stop it totally for two months was after I had a course of antibiotics for a sinus infection, but when I asked the doctor why, he just said it was coincidence. I just want it to go away now because I feel it is taking over my life and now I arrange things around it half the time, and end up not going out just in case or because of embarrassment. With today's technology you think they would have found a cure by now.

anon336400
Post 95

I was diagnosed with CIU at the beginning of this year. I have struggled with hives and what I thought were allergies my whole life. I am taking allergy medicine, zyrtec, and zantac daily in large doses. I have felt very alone and embarrassed by this disease. It is good to know that some of you are finding some relief in changing your diets and cutting out sodas. Good luck to you all.

anon319069
Post 93

I had chronic hives for three years. I found out I was allergic to gluten. I stopped eating barley, wheat, rye and oats (for me). The hives disappeared.

I also found out that by trying to maintain a more alkaline ph balance by drinking raw apple cider vinegar, I caused a host of toxins to flush (both good and bad), as I flushed toxins which showed up on my skin in the form of hives. I took activated charcoal to help flush the toxins and the hives were gone in two days.

anon312213
Post 92

My husband had surgery in October. Less than 14 hours after leaving the hospital he started having CIU. Did anyone else start after surgery?

anon300458
Post 91

My CIU began in 1990 with small, raised welts. The condition persisted and became worse with the welts becomming unbearably hot and itchy. At the outset, I was prescribed Seldane (now off the market) and two pills worked to control the hives, then four pills, then six pills per day, etc. Zyrtec, benedryl, and other antihistamines were not as available or known to me at that time. A cold bath was miserable, but less miserable than the hives. The cold water relieved some of the burn and helped the hives to dissipate.

The hives manifested in different ways, usually with hot, red swollen hives, but I could often feel a tingling sensation in my lips or the corner of my eye, and I knew that my lip or eye was about to swell dramatically. While embarrassing, at least it didn't hurt, burn or itch!

The hives went away, but came back again in full force some 10 years later. I have the sense that my condition is cyclical, occurring every 10-12 years or so and lasting for about one or two years when it does occur. I am due for another round with this at any time, but maybe I'll get lucky and be wrong.

Incidentally, I also have vitilgo (loss of skin pigment), which runs in my family, but is still mildly detectable now. I can't help but wonder if the two are somehow related and stem from an autoimmune issue.

At least the vitilgo, while not attractive, is not uncomfortable. The hives are enough to drive a person crazy with discomfort.

The best to all of you who have this condition. Please post if you come across any answers/solutions.

anon293837
Post 90

I've had CIU for about 10 years. It actually went away for a couple years in the middle of that time, but I always knew it was lying in wait to come back full force, which of course happened. It is not an allergy, and I don't have lupus or a myriad of other sicknesses.

I get pressure hives, so walking barefoot can produce them on the bottoms of my feet. I also get them on my lips and eyelids as well as every other body part. I take hydroxyzine and it helps control it. It might knock down a flare up but doesn't always get rid of it. Some days I scratch off layers of skin. I have scars from scratching when I just could not stop.

I would volunteer to be part of a research study if anyone knows where they might be studying people like us.

slampoet
Post 88

I have had CIU for 17 years. Let me say that again: 17 years. I have had every test, combo, homeopathic, holistic, western/eastern meds that were available. I have tried. I have tried the "best" doctors in the world that specialize in CIU inclusive of Dr. Soderbergh in NY,(NYU) Dr. Kaplan in SC (retired now) and Dr Saddhi in Maryland (Johns Hopkins) I won't bore you with the details.

I will say this. I do not have: lupus, HIV, thyroid, liver issues, cancer or various other auto immune diseases (although if you haven't been tested, you should be tested for Lupus). I have found Cyclosporin helped me for a short time (less than a year) and Xyzal continues to help although I take double the dosage. If you get prescribed Xyzal, do research on lowering your costs because it can be costly. I have a discount card that helps me.

anon285994
Post 87

I was diagnosed in 2000 with CIU. I am 35 and have been taking ceterizine for the last 12 years. My ESR has been high for the last year, which is causing some concern. I am concerned that it could be a symptom of Lupus!

anon282644
Post 86

I have been suffering with CIU for the past three years. I take Allegra 1 1/2 daily; Aller-Tec daily; 6 Hydroxyzine daily and 40mg of Predinose every other day, and of course I have gained probably 20 plus pounds.

When I am really miserable with pain and itchy, I use Tiger Balm patches on the really bad areas so I can get some sleep. Tiger Balm really has helped and you can get it at Walmart five patches to a box for $4.44. I am appealing my insurance company's denial to give me an injection of Xolair.

anon274687
Post 85

Take an alcat test in Florida. There is an unknown antigen causing your body havoc. It's worth the money to never suffer again and chronic inflammation of the immune system leads to more serious diseases.

Your doctors don't know about chemical intolerance and they don't care to learn about it. Trust me!

anon268408
Post 84

I have been having CIU since February this year. My lips swells extensively. I look ridiculous. Today my chin swelled. It looked like an egg. This is an embarrassing disease, which seems to have no cure at all. I have been using Telfast and take about four pills a day. It happens almost one in every four to seven days. I am so depressed. I do not want to make plans in advance because I never know if I will look okay.

My life has stopped. I am 36 years old and am miserable.

It is very bad to have a disease but no cure for it.

anon261662
Post 83

I have no idea what's going to happen to me, but I did find all your comments very helpful. I was told that I have CIU today, and I started my research on this rare decease, virus or allergy. You can call it whatever you want because nobody know what exactly what it is.

Good luck to everyone! May God be with you.

I will keep everyone in the loop.

anon256450
Post 82

I have really awful CIU. I also have had a few idiopathic anaphylaxis reactions. I take 1500mg cellcept (immunosuppressant), 200mg cyclosporine, 40mg doxepin, 50 mg vistaril, synthroid, levothyroxine. I feel like an old person (I'm 26). It all got way worse after my thyroid cancer sent my immune system wacky. All the drugs stink, but immunology seems to be the key to management. I tried dapsone but was allergic.

anon254031
Post 81

I have suffered from CIU for the past 13 years. It started suddenly, out of the blue, for no reason. Nothing had changed in my diet and initially, it was put down by doctors as a change of blood.

I have visited specialists but no one has been able to help. I call my antihistamines my itchy tablets and they are the only thing that help and I take them each day. I would say it is under control but I do have flareups. I am saying that I no longer visit my doctors about it as they are simply unable to help.

anon246227
Post 80

I have cured my CIU with the help of Vitamin C, Nettle leaves and Qurecetin! Good luck to all of you.

anon243299
Post 79

I started suffering from this condition a few years ago (mid 30's). After I had my son, I started having more outbreaks and had no idea why. I was told to try eliminating dairy and wheat from my diet and did so for over a month. My sinuses cleared, however, I was still having itchy outbreaks.

To make things worse, my son started having them too, when I would have them. He breastfeeds and the naturopath thought it was something in my breastmilk and likely had something to do with how my body was not breaking down proteins properly. I had my son tested for food allergies and it showed he had no allergies at all. I was perplexed. Then, I remembered how I had no rash when I went on a raw vegan diet for a few weeks.

I started studying up on the acid/alkaline body balance (after watching the movie, "Fat, Sick and Nearly Dead" in which the main character finds relief from his urticaria when he does a juice fast). It turns out, this is the solution for both my son and me. I used to think I must be allergic to some kind of food and just couldn't pinpoint it. It turns out whenever I eat too many acidic foods such as meat, dairy, grains and too little alkaline foods such as raw vegetables and fruits, my body starts to have problems. Now I know I can correct an outbreak within a day by going all vegan with mostly raw produce (green smoothies, salads, fruits). The problem was my digestion was slowing down whenever I eat the acidic foods, resulting in constipation and followed by hives.

I was amazed to find my knee pains went away also (I run 5 miles at a time and often my knees would throb for hours afterward) and that it was all tied to inflammation. I hope this information helps someone else.

I know how aggravating and frustrating it can be to have this condition and not know what it causing it. I'm just happy that I found a cure for my son and I that doesn't require drugs, just good food!

anon243250
Post 78

I have had CIU for 14 years. Just started out of the blue, no rhyme or reason known. I have been on all the typical antihistamines, immunosuppressant drugs etc., but most didn't work too well. Few years ago I went on Doxepin, 40mgs and that seemed to keep them at bay, although I would have breakthrough hives if I drank a soda or anything "diet". I have since changed my eating habits and I eliminated all sodas and anything with aspartame in it.

The only artificial sweetener I use now is Stevia and I have not had any breakthrough hives at all for four months. I'm getting ready to lower the dose of Doxepin again and hopefully get off it entirely if I find the elimination of these things may be what has been causing the hives as I suspect. Good luck to all of you. I know how horrible this condition is to live with. Please try to cut out any of the artificial sweeteners and see if you don't notice some improvement as I have.

anon241428
Post 77

I read all the horror stories and yes we all have the same symptoms and same prescriptions but has no one truly found any cure? What about all these people claiming to sell you their book and diet plan? Does it work? I am frustrated with this crap.

anon216834
Post 76

I am 32, Male from India.

Symptoms: Terrible itching randomly appearing on different parts of the body. If the itching begins it continues for 15-20 minutes and when I scratch the itching area, linear red hives develop on the skin. When the itching subdues after 10 - 15 minutes the hives vanish. Then again the itching starts on the different parts of the body. Except my chest and stomach, I saw the itching appearing on all parts of my body.

Medication: I was prescribed Allegra and Atarax for 15 days and I had no itching which worked well while I used them. Now I am using Cetrizine which is cheaper and working as effectively as Allegra. When I visited another dermatologist I was advised to go on Cetrizine and advised to use it for six months without any break. I am confused and want to know if there are any ways to over this issue in Ayurvedic and homeopathic medicine.

I am not sure where to go from here!

This disease broke out only a few months ago -- in February. Prior to that I was hospitalized for four days due to liver enlargement. I am not sure if this triggered this disease.

anon173990
Post 75

I was told I had Chronic Idiopathic Urticaria in 2000. It started when I was about seven during a skiing holiday. I had a mild anaphylactic shock in 2002 (I think) and was since given an epipen which I have been carrying around ever since, despite having never used it.

I have taken a variety of medicines: telfast, zyrtec, cimetidine, and am now taking one xyzal a day. I have found that it has gotten worse as I have got older. Originally the rash disappeared in the summer but it seems more consistent now.

I am now being treated by a woman who does Radionics. At first I was doubtful that, as an alternative treatment, it would not work. However, since she has been treating me I have dropped from taking two xyzals and two cimetidines to just one xyzal a day. Although the treatment is strange and I have never met the woman who does it, it seems to be working. I would encourage anyone to try it.

I am now in my late teens and have been having radionics treatment for about eight months, and, despite its inconsistency, it has worked better than the other pills.

anon157616
Post 74

Both my son and I have idiopathic urticaria. I have a history of multiple allergies, and sjogren's. My son has no history of allergy, but has a history of asthma.

My son started getting hives mainly during the latter part of the day, with the worst hives occurring at night.

I took him to my allergist thinking he had some type of allergy. My doctor, who had just been to seminar on this very subject, said that this condition was occurring in my son due to the normal decrease in cortisol levels that occur during the day. Cortisol is normally released in the morning, and slowly decreases throughout the day, with the lowest levels at night. Cortisol drives the the metabolic cycle. In some people, when the cortisol level drops, they get hives.

I got them from taking an antibiotic. It took only two pills for the hives to start. My entire leg, or arm would turn red and swell. This lasted several months.

In both my son's case, and my own, we were prescribed Axid and Allegra taken twice per day.

My son had to take this for five years, while I had to take these meds for several months. I am happy to say we are cured, but I still keep the meds around in case we have a recurrence.

anon155502
Post 73

Wow! I didn't know so much was out there on this subject, such an uncomfortable malady. After reading the entire string of posts I have come to appreciate that I am not alone. I suffered with hives from 1992-1998 before identifying the trigger which is soda pop or anything carbonated. I stopped drinking and it never appeared again until 2003 when I had a 1/2 cup of ginger ale. The hives lasted three months then went away. In January, I drank 1/2 cup of cola and they came on with a vengeance and I'm currently under a doctor's care on steroids and antihistamines and xyzal and zantac. It has put the hives at bay for now. I just wonder after the treatment ends in March if will they return. I hope this helps someone identify their trigger.

anon154504
Post 72

Have any of you tied the chronic hives to consumption of diet products with aspartame?

I have been suffering from CIU for the past five years, and aspartame is closely connected with my hives. It seems that I am especially allergic to that product, that is present in many soft drinks, isotonic drinks, chewing gum and yogurt. Please let me know if anyone else ever linked this product to their case. Thanks!

anon147783
Post 70

I was diagnosed with CIU & Angioedema in 06. The Urticaria is now not as present as it was, unless I exercise hardcore. Then, hives appear even with the aid of my daily loratadine (10 mgs 2x) & a dose of 20mg hydroxyzine before exercising. My body became hypersensitive to where I was anaphylactic (anaphylactoid) to all foods (yes, apples, milk, pasta, grapes, etc.) in a critical way for more about four years. I now am 85 percent better with the Angioedema and Urticaria. However, without my meds, I would be in trouble.

I experience symptoms every day, ranging from loose bowels, body aches, tight lungs, some lip, eyelid swelling and migraines. I was 32 at the time and devastated when I lost my health. Research, excellent health care and switching to organic foods (body wash, shampoo, etc) have enabled me to get almost completely well. If this is as well as I get, I'll accept it! I can live fuller now, not in such a critical state every day, which is extremely difficult, emotionally.

I wish those that read this the best. Follow your instinct and listen to your body at all times. I'm alive today due to those instincts and very, very lucky to be.

bunnyboiler
Post 69

I've suffered CIU for five years and it's worse than ever and nothing seems to be helping me. I have been to my doctor so many times he's fed up looking at me.

I had to go to the hospital because my doctor's surgery was closed and they told me i was the worst case of CIU that they had seen. I have tried everything going and nothing seems to work!

Nobody understands how bad this is and it's embarrassing for me when it appears, which is every day. I'm now feeling depressed and ave had days off work. All i want is a normal, happy life! Is that too much to ask?

Now I'm seeing a specialist and even she doesn't know how to treat this. I'm just hoping for the best! I sympathise with everyone who suffers this terrible disease. I know how you feel. All the best!

anon139553
Post 67

my partner about a month ago started to get these red itchy lumps all over him. We have tried creams and nothing worked, so then the doctor gave him some sort of steroid tablets. They help, but when he stops for a day or two they come back with a vengeance. now he can hardly walk. the spots are larger and burning as well as itchy. any ideas anyone?

anon137685
Post 66

I had patches of itchy spotty scaling skin over the past eight years which was manageable. I was then given Prednisone for asthma and bang! The steroid took my immune system to an all time low and now I have CIU and am being treated with 40 mls cetirizine and 25mg Hydroxyzine. It's only a holding medicine in my eyes so I have been offered the wonder drug: Dapsone! Any views? --Mitch

anon135916
Post 65

I've had horribly itchy legs for the past 30 years, almost always symmetrical and it seems brought on by stress or heat.

I found out that if you put a really hot, wet cloth on a mosquito bite, it will stop the itching. So I started spraying scalding hot water on my legs when they start itching. It's a really strange thing when I do it. The itching becomes so intense as the water gets hotter, and only as it gets scalding hot, the itching is satisfied and I have what ends up to be almost a first degree burn.

But the itching is gone for about a day! I wanted everyone to know about this because it works, but it is also dangerous, and I wonder it may be something that eventually won't work anymore, not sure.

anon133751
Post 64

Ok where do i start about my CIU. That's right, it's now been two years and four months since my first outbreak. My outbreaks occur every day without fail. It's ridiculous.

I've been on everything possible. Cyclosporin (very nasty), imuran, you name, it I've had it. I've had eight anaphylactic shocks this year alone. Can anyone please tell me what else i can try? My body is used to all antihistamines now.

So i have to go docs in get injections to slow em down. This happens every day. Please help.

dolling
Post 63

I have been suffering with ciu for over 20 years. I have also tested positive for acid,(autoimmune). i also have M.E./CFS. i am the fifth person down here in the U.K. to test positive. i am on cyclosporine and off label antihistamines, and this has helped.

But the cyclosporin comes with high risks. i have just come out off kidney failure due to these drugs, but i have no choice i have to take them as i have it so severe.

If you suffer this illness, my advice would be definitely fight for disability payment. don't ever give up if the government refuses you, as it is a very severe debilitating illness.

i had it so bad that, before the cyclosporin, i could not even wear shoes. It felt like i was walking on rocks, and my feet would swell up as soon as any material touched them, regardless. i can't tell you at that point the number of different shoes i bought as i thought i was wearing the wrong shoes, lol.

My joints have also been affected severely where i have to use braces for my wrists. i am constantly fluey with sinus problems if i try and do any activities. my body is severely scarred with 20 years of scratching to the point i could have ripped my skin off.

I got to the point i couldn't live anymore so they had to take drastic action. No, i am not happy about being on the cyclosporin, but i have no choice as it is very evident that because i have the autoimmune ciu as well as ciu my body has been severely attacked by this illness. the aclu is very difficult to treat. ciu is normally controlled better with avoiding triggers especially stress, but i am affected, regardless of whether the conditions are cold/hot.

Hope this help with any queries you have. if you want any advice just let me know. Jo

anon131247
Post 61

I hate that all of you are suffering but I am glad to know that I am not in the alone. My CIU started May 2010 and is still going strong (12-02-10). I was on prednisone for 4 months and put on 22 pounds. I am on Xyzal, Zantac, Zyrtec, and Hydroxyzine every day.

I will go days without any breakouts, then Bam! Welts everywhere, face swollen and breathing problems.

Been tested for lupus, RA, thyroid problems but no luck. So doctor says CIU. I am so over this.

I hate breaking out, It makes going out difficult. I am highly allergic to Mold, even had anaphylaxis when they were doing the skin testing,,that was a joy. I wish they could find out what is going on with the CIU

anon125179
Post 59

To all you CIU sufferers, my thought's are with you. my daughter has recently been diagnosed with this disease, and until then i had never seen or heard of CIU. My daughter went on holiday in August and got bit very badly by mosquitoes, and since then she became ill with what the doctor thought was a virus. I can't help wondering if this has played a part in CIU.

I have seen this most evil rash, severe pain, swollen face, lips and neck, misery this has caused. No one was able to tell my daughter what this so called allergic reaction was. Attended A&E three times in a week, where iv Prednisolone was given, this seemed to help, even though only for a few hours after.

She is now following a diet of organic and wholemeal products. Awaiting results from further tests.

I hope and pray that there will be a cure one day for all you people with CIU. i will never give up faith and hope. --KT

anon121733
Post 58

I have CIU for three years now. i also haven't had a night's sleep in three years! I have last my job of 13 years due to my condition. I have tried to get Disability on a few occasions, but am always turned down! I am now awaiting an oral appeal so i can explain face to face just how debilitating this disease can be.

anon121167
Post 57

i am a 31 year old female, which seems quite common in the little research i have done on ciu. For about six months i have been breaking out in hives pretty symmetrically on my body from my head to my toes. Above and below my eyes, my cheeks, chin and lips swell up.

I can't believe rich hollywood women pay for lips that look this ridiculous. Several months ago i saw an allergist. He asked a lot of questions and seemed to know things about me he had no way of knowing. He asked what kind of meat i like to eat and somehow assumed i like pork. he knew i had a baby at a young age, as if I'd made several references to my boyfriend. But I never really saw how any of these things had to do with anything. He put me on zyrtec and zantac, which helps. It helped more at first than it seems to now. It's frustrating to look in the mirror.

I'm going to speak to my doctor soon about a couple other drugs that seem to help other people with common symptomatic type causes brought up. Thyroid, hormones, auto immune all seem to be brought up often and the two medications that seem to possibly help are called plaquenil and synthroid. Go ahead and research these and speak wit your health care providers. God willing this will help me and possibly more people who care to read this. Luck, prayers, and tears be with you all.

anon120124
Post 56

I've had CIU since I was 21, and I turned 51 last week. I take the generic form of Atarax (Hydroxyzine)every night and it seems to work fairly well. I go the the doctor one time each year and receive a prescription for a 12 month supply.

anon117918
Post 55

I started feeling prickly in May 2010 and thought it was just heat rash as we had sudden nice weather. However, then I noticed lumps appearing on my fingers and hands and thighs. I ended up covered in hives which grew larger and merged together, then my lips swelled and my throat closed up and I was admitted to hospital as an emergency. That was in July. I was discharged with an Epipen and am on 400mg of antihistamines a day which knock me out.

I'm still waiting to hear from the immunologist I was referred to. Apparently almost dying of anaphylactic shock isn't urgent enough to be seen quickly by an immunologist, yet they will waste the time of dermatologists and other doctors whose investigations come to nothing.

It's obvious there is allergy and immune system involvement so why the problem getting to see an allergist in this day and age? Why are we sent for exploration down several other avenues before we can get to see the 'big man'? Seems like a stupid waste of time and resources to me.

Apparently we have only one immunologist to cover our region so that could be the reason why people aren't getting to see him. In which case isn't it about time the powers that be saw to it that they employ more immunologists? This patient is becoming impatient now!

anon117494
Post 54

This started for three months in 1975, came again 10 yrs. later for about five months, next was six yrs. later, lasted five or six months, then four years later and lasted for seven months. Got breast cancer and didn't have any for 12 years.

Now, I have had CIU for the last two years and have tried everything. Unfortunately, prednisone is the only med that will control it as long as I take Fexofenadine and Hisminal. Two years on prednisone is not good!

My allergist is doing more research on possible Cyclosporine in the treatments of CIU. This is a drug used to help transplant patients to not reject the organ. We will see.

anon116632
Post 53

I have been breaking out with CIU for 10 years now. i have applied for Social Security and was denied, because they said I wasn't disabled enough. But they fail to realize that no doctor has figured out why some of us have this disabling disease.

I have searched the internet on CIU, and it is a disabling disease. The CIU stops you in doing a lot of things. I hate not being able to go do family outings because of the CIU. It all started when I got bit by a small bug, and doctors told me it was just a coincidence. Imagine that, right?

This CIU is like a person having a heart disease! It's all on the internet! My life is boggled with this CIU and with the CIU i am confined to my home and usually to my bed during a CIU breakout, which could last up to seven days. I don't know when I'm going to break out with this CIU.

So how can we that have CIU and not qualify for Social Security disability? We can't even hold a job because of the outbreaks of CIU. We can't even do the probationary period because of the CIU. I think that people in general need to educate themselves before they ridicule and look at us like we are monsters.

anon116466
Post 52

I have had almost daily hives since the 6th grade (in the 8th grade now). It was gone for a few months until the hives came back as strong as they were before.

This year, I was praying that I didn't get a hive on the day that I had pictures taken. It would have been horrific.

My mother refuses to believe that there's anything wrong with me, even though she's aware that I get hives all the time. She won't take me to the doctor, so I'm pretty much stuck with this for years until I can take myself to a doctor.

Is there anything I can do to prove it to her that this is destroying my life? There has to be an underlying reason for this.

I shouldn't have to carry a mirror and a huge makeup bag with me everywhere I go.

anon115848
Post 51

Can someone tell me how long it took them to get disability? I have been dealing with hives for over two years. I break out every day and three out of four weeks are the worst. I have lost sleep and am trying to deal with depression. I haven't worked in a while and was wanting to go back to work but I don't want to be undependable. I don't ever know when a breakout will occur. Please help and give me more information.

anon111152
Post 50

In my opinion the first thing you need to do is educated yourself on Family and Medical Leave Act (FMLA). This entitles eligible employees to take up to 12 workweeks of unpaid, job-protected leave in a 12 month period for a serious health condition.

In my case, I am covered under FMLA with Intermittent leave for a serious health condition called Chronic Idiopathic Urticaria. Intermittent leave entitles me to take leave in separate blocks due to my chronic condition being unpredictable.

Some, or should I say, the majority of us cannot afford taking the unpaid time off of work that were entitled to once we are approved for FMLA leave. Well, that’s where the second thing I want to inform you about comes into play.

After you're approved for FMLA you can also apply for State Disability Insurance (SDI). Disability Insurance (DI) provides partial wage replacement to eligible workers who are unable to work because of a disability. This is something I just discovered we're entitled to as well. I applied and was approved three months ago.

For those minds that are wandering off, wondering whether I was honest when filling out that application, the answer is yes. lol. Just remember, in this case you want to be honest, because the more money you make, the more you will get back.

And, last but not least, do not-- I repeat do not let your Allergist/M.D. tell you that you do not qualify for either one of these benefits, as my first allergist tried to tell me because I was taking intermittent FMLA leave. I called membership services and asked to have my allergist changed to one out in L.A. This new allergist gave me the same answer.

I was heated inside by what I was hearing but controlled my anger and put him in his place once he heard me educating him on our state and federal laws. After educating him on the laws and my civil rights, I gave him an ultimatum. He could either fill out the forms that I was providing him to fill out for me to the best of his ability and let the State decide whether I am eligible or not (as it should be done) or a letter from him in writing stating that he will not comply.

Well, for some odd reason, lol, he said he would fax me a copy for me to go over once he completes it, just to make sure everything was correct because he wouldn’t want to jeopardize my opportunity. After receiving the fax all that needed to be corrected was the ICD-9 code which he corrected and faxed over to me before he mailed it with his original signature, for my records.

I hope this information will open the door for many of you to have more time to concentrate on taking care of yourselves or your loved ones with a little less stress on your mind. Good Luck! I never thought I would ever be saying this but knowledge is, in face, our best defense!

anon111133
Post 49

I have been suffering from CIU since 1995 and it made my life unbearable. in my case the cold weather will trigger it off. My skin gets hot and my face hands ears start to go red, then the skin will raise and it becomes so noticeable that people start to stare. I've found it hard to live with.

Four years ago it went and I was able to live a normal life. It unfortunately came back five months ago. I was prescribed a form of steroids which I had to take for one month, and Fexofenadine. Neither of these have worked. I am still taking the fexofenadine every morning and I still get outbreaks every day. The doctors tell me my only cure is to live in a hot country, because the cold weather will always trigger it off. This is something I have to live with for the rest of my life.

anon109129
Post 48

I'm just can't believe how much suffering a damn allergy can cause!

I broke out in hives seven weeks ago and am taking antihistamines six times a day and I'm still breaking out -- albeit less itchy and with smaller wheals. I'm so drowsy, too -- great for my 60 mile commute daily!

If I forget so much as one antihistamine I get a severe breakout.

I'm very good at stopping myself from scratching but once I'm asleep I just rip myself to pieces. My poor legs are looking terrible!

My sex life has been put on hold because I'm so embarrassed (despite being with my partner for eight years) and I daren't go swimming for fear I will clear the pool. I know I'd be concerned about swimming with someone covered in this nasty, evil rash!

I've changed my wash powder and rewashed everything, changed my make up (even though my face is the only clear part of me) changed my soaps, stopped wearing perfume and stopped eating processed foods. Oh, and I've started wearing rubber gloves for cleaning.

However, I do have Hashimoto's Thyroiditus (autoimmine) and Endometriosis (autoimmune) and Psoriasis (scalp only, but again autoimmune).

So after reading up on the internet I am very very scared/ worried/ anxious that these hives aren't going anywhere any time soon.

Thinking of all of you. Take care. -- LJ

anon108303
Post 47

To all you who suffer - I feel your pain. I have had CIU for 38 yrs. I broke out when I was 10 from a generic aspirin and now I am 48 year old. I had it for about five years straight and since then it has been cyclic. I am in another break out phase from February.

I have been to general physicians, allergists and even an acupressurist. etc. and was told to live with it. Now I am on generic Allegra and that keeps it at a minimal breakout.

When it is really bad I take a medrol pack or two. No one really understands the feelings we have during a breakout or discomfort and pain we feel.

Keep your heads high. There are more of us than we know. You are all in my prayers. I hope you all find comfort.

anon107568
Post 46

I have had hives for more than eight years. It truly is life altering and I believe it started when my fiancee gave me genital herpes.

Herpes is a virus and I did read that viral infections can cause chronic urticaria. I also had spinal meningitis as a child and perhaps its a "perfect storm", but I am convinced that that is what caused it.

I have been on a combination of famotidine 20mg, hydroxyzine 10mg 3 x a day, and Doxepin, and it seemed to work for a while, but not anymore. I am so frustrated and feel like I will never have a normal life.

Thanks for all the posts. Please let me know if anyone else is aware that they have the herpes simplex virus 1 or 2 and think that may be the cause.

I am also on suppression medication for that and it still doesn't seem to do the trick.

anon92281
Post 45

After four years now, come to find out it's chemicals for me. Body spay, perfume, cleaning products, old spice, laundry soap, hair spray, even non stick pans.

now that i have got rid of all that in my house i only use real oils and baking soda and mild soap to clean. guess what is going away? only when my son comes over from his dad's with his smells do i have a reaction. bless you all.

anon89017
Post 44

I have suffered with CIU since the age of 20, I'm 32 now. The itching and hives have just returned after a four year break since I got pregnant with my first child and then last year had twins.

The only thing I can think has triggered it again is my boys all got chickenpox, this and the stress of looking after three ill kids I'm sure had triggered it again.

The itching is intolerable and I'm finding it difficult to drive because of itching and fatigue on the antihistamines. Back to see the GP tomorrow. Just praying that it doesn't last like the last outbreak.

anon87476
Post 43

i have suffered for nine years. My eyes swell and so does my nose. i look hideous. i itch every day, but flare up maybe twice a week. i also have RA.

anon87015
Post 42

After reading everyone's posts I feel hopeless. I have yet to see an allergist but I am praying the ER doctor was wrong and this isn't what I have. I can't live like this for the rest of my life and I can't stand feeling drugged.

anon86379
Post 41

I started having this condition last April. I figured every time I'm feeling down or I'm in a lot of stress, the wheals will start to appear. Sometimes, I can tolerate the itch otherwise I will take Loratadine or Cetirizine.

It's kind of embarrassing, especially if the attack occurs while I'm at work. (sigh)

I guess I should stop putting myself into a lot of stress.

anon83552
Post 40

I have been suffering from CIU for almost a year now. the first few months were really tough and caused me to have anxiety attacks every day. Every test I take comes back normal, which leaves me frustrated. I don't know how to bounce back from this. If there is anyone who can offer some helpful tips, I'm listening.

anon79902
Post 39

I certainly know how everyone feels on CIU! I have had this since 1997, which was my first outbreak.

I have gone to family doctors, cancer doctors, allergists, and now dermatologists, too. No one has answers. Just lots of antihistamines, which I am tired of. Mind you, I have two part time jobs because I can't be hired full-time since I take off so much time when I have a severe outbreak. Every person thinks I'm a monster with these red welts and open skin sores since I scratch so bad. My family doesn't understand how bad it hurts or makes a person feel when all you want to do is to scratch!

So now I am dependent on my husband to support us (We have three kids ranging from 20 to 2) I used to have a great full-time job. Now I work at night so no one can see me, as a housekeeper, and I am a CNA and a Travel Consultant!

Can't go in the sun, which stopped me from boating and camping. I have to be chilled to survive.

So if anyone has any idea -- can we CIU sufferers take disability? Since there is no cure and no one will hire us? yes, I have tested for everything and all came out negative!

anon78108
Post 38

I have had CIU since I was nine years old, I'm now 35 years of age. I have seen all types of doctors. Some did very well, others not so well. I've kept many food journals over the years. I've limited my diet and taken too many medications to keep track of.

It hasn't been easy or fun, to say the least. I have never felt disabled or different from "normal" people. I've educated myself very well on my disease, I don't feel left out of life. I always have an inhaler, EpiPen, and whatever medication that was prescribed to me at that time.

It is my hope that people never lose faith and never give up on themselves. The human body is amazing to me, even when I've been disfigured and look or feel like I look like a monster. My hives cause my skin to bruise and at times I look like I do have a major disease other than Chronic Idiopathic Urticaria.

I've had to develop a good sense of self and I've tried very hard not to take my life for granted. I had to face at a young age that at anything time I could stop breathing. I had to learn how to care for myself and I also had to learn how to use self restraint during an outbreak.

I guess my point is that I do know and understand my disease very clearly, I respect my body and know the pain of rejection from people who look at me strange or don't believe me when I can't speak. I've even had people make fun of me for learning and teaching my friends and family sign language to help me in very bad outbreaks.

Please, please, don't give up on yourselves. There are people who do know, understand, and care. I'm one of them and I'm also one of the many suffering person who also has been there and is still dealing with CIU. Take care always.

I'm sending everyone whose been where I've been lots of love, understanding, and hope. Hold your heads up high and keep doing your best to keep control of your disease.

dechdech0023
Post 37

I've had CIU for about eight months. my allergist told me that I have an infection in my throat and that's why whenever I'm sick, likewise having colds and cough or flu, they become visible and even when I'm having my menstrual period it became visible too.

i took medicines like fexofenadine, zyrtec and ranitidine. These all worked, but when i am sick, none of them works. is there a cure or any medications needed to prevent this? I've been suffering CIU so badly, because it affects my studies.

anon75842
Post 36

I don't know if I have CIU, but the itchies started from my feet and over a year moved up my body. Wherever I scratched a welt would form, like an autograph. I could write my name! Finally when the itchiness was out of control and covered the front and back of my torso, I went to see a dermatologist. I was 48 at the time, and he thought it may have something to do with perimenopause.

He prescribed fexofenadine, daily. It has worked, but I don't like taking medication daily. I tried stopping every now and then, and the itchiness comes back after 2-3 days.

Does anyone know of long term use side effects? Good luck to everyone here!

anon75140
Post 35

wow, i feel lucky as i don't have such a serious case. i thought i was just allergic to everything. The doctor put me on allegra twice a day and that seems to work just fine. if i miss a dose, i start to get hives on my fingers.

anon75081
Post 34

i have been suffering from CIU for 30 years. I usually self manage minor outbreaks but i get a major outbreak about every four years.

During a major outbreak I get hives in my mouth and and in my throat and urethra, making it painful to pass urine. I get them in my ear canal which is painful.

I have two types of urticaria: giant spongy lumps which don't itch but are very painful and smaller lumps varying size from 3 mills to 10cm. Sometimes they all join up together. These are intolerably itchy and i feel miserable. I have been tested for every auto immune disease going. I am also Celiac and borderline underactive thyroid.

I take fexofenadine every day to manage the minor out breaks. I also have an epipen because sometimes the urticaria affects my breathing. My daughter has hives now and again as does my son, so i am wondering whether there is a genetic link.

anon74623
Post 33

I have been suffering from urticaria since the last seven years. I have not been able to find the cause, but from the last three years i have taken to homeopathic medicines and it has brought me great relief with no side effects. I cannot say that this is the most conclusive treatment, of all the alternative treatments i tried, this is the one which works for me.

Now i take the medicine and i don't get it for months. I may get it once a year. I take the homeopathic medicines again and i am fine. No harm in trying.

anon74516
Post 31

I have suffered from ciu for over six years. It is completely destroying my life. Nobody understands. Any time my skin is touched, even lightly, a wheal appears. How would you not like to be physically touched. Ever. Have an itch on your face? Sorry. Can't scratch it, or wherever i touch a raised up welt appears. No help. No life. Living in pure hell. I give up.

anon74036
Post 30

I just passed the one year anniversary of having hives all day, every day. I started out seeing a dermatologist, then went to my GP, finally wound up with an allergist. They agree that it must be CIU.

I take Allegra during the day and Zyrtec and Singulair at night. This makes the hives tolerable, but they are always lurking there, just under my skin, waiting to come out. Plus, the antihistamines make me feel drowsy all the time.

My allergist is very sympathetic, unlike the dermatologist, who thought that, since it wasn't life threatening, then it must not be a big deal. Maybe it's not life threatening, but it's life limiting and pretty debilitating.

I feel like no one really "gets it", including my husband. To be itchy all the time when it's at its best, and to be covered in hives from my knees to my shoulders, front and back, when it's at its worst, is horrible!

It's nice to read about other people's experiences and know that I'm not alone.

anon73975
Post 29

Anon: Sounds like your husband may have celiac disease! Try a no-gluten diet. I bet he starts feeling a lot better!

anon71690
Post 28

I have CIU and it is so bad. I could be driving in my car and all hell come out. my doctor put me on xyzals and it not working. It bad to have this stuff. good luck to everyone to find something that helps

anon69995
Post 27

After an intensive empirical self study I couldn't draw down on any cause for my sporadic, but intense and really really itchy hives. Nothing provided relief and working with my allergist and doctor confirmed that nothing in Western medicine was going to help me. Others may find some relief, but I wasn't going to be so lucky.

With nothing else to lose I started exploring eastern and holistic approaches. I'll spare the details and get to the punchline. Emu oil and diaper rash cream are the only things that provide relief. The key, however, is to catch the hives at inception. If I can get either of these on, particularly Emu oil, while the hives are about the size of a quarter (25 cents), they have a good chance of dissipating. It may help if I put it on once they've grown to cover my arm or side, but it's maybe only a 10 to 20 percent chance.

Emu oil isn't cheap and may be harder for some people to find locally, but it's worth a try if if's in your budget. Diaper rash cream is another item worth trying. Much cheaper and easily available, but be careful, the zinc oxide stains everything white. Wear your painting or gardening clothes if you have any.

anon69505
Post 26

I developed CIU at the onset of my first menses at age 12. I am 54 now. Every six or seven years, the hives come back for about three months, each cycle 7 year cycle a little less intense. The only thing that has worked to nip it in the bud is massive doses of prednisone.

The doctors don't want to give me an effective amount so I get the stuff from Mexico and take a few hundred milligrams a day till it's over. It works immediately on the inflammation. You just have to taper off slowly from the prednisone. No antihistamine or anything else has been effective in the long run.

anon69478
Post 25

I am 58 years old. I have had CIU about three years. It started after I had blood drown at the doctor's office in the lab. My arm was swollen. I later noticed it covered my arm.

I have it on my arms, legs, face and hands. I keep an epipen, take zyrtec, prednisone, and zantac. If I get cold, I hurt. The swelling gets so bad in my face and tongue I have been admitted twice. Nothing works. No one understands.

anon67425
Post 24

I have had CIU since I was about three or four years old. Now I am 16, and it's been such a big struggle for me and my family to find anything that can work for me.

The doctor tried putting me on steroids a couple times, but all that did was make me gain 10 pounds every time, and didn't do anything for my hives. Now, I usually take a combination of I think 120 mg of doxepin and some off-brand zyrtec or benadryl every day, and sometimes I even have to take extra.

However, even when I take my medication I usually have hives somewhere on my body at all times. I've missed so many days of school my whole life, because of the embarrassment of having hives all over my face, hands, legs, and arms. Also, whenever I get sick, there is no way for my hives to go away, it's absolutely horrible.

I really hope that someday they come up with a cure, because I was told I will probably have these hives my entire life.

anon66750
Post 23

For those waiting for a cure, this condition is only the tip of the iceberg for autoimmune disease. Our mast cells are out of sync, for no reason but something the body has identified as foreign.

Find a doctor with autoimmune knowledge! The medications I have been on for over a year now are: Doxepin, Plaquenil, Zantac, Zyrtec, and Singulair. A lot of meds but the combo seems to work. I have outbreaks only with my menses, stress, and after any sickness now. I use Calamine lotion for itchy skin.

I tell people this is my rash and not to worry about being contagious, which seems to be their biggest fear.

But what a mess socially, when you are covered with rash esp on your face. I stay home a lot! The only hope now is through immunosuppression till there is more knowledge about the auto-immune diseases. Hang tight all!

anon65745
Post 22

My partner also has been suffering from CIU for the past 18 months. He has been to see doctor after doctor and spent a lot of money on specialists to only be told that he is in the 10 percent of people that they have no idea on what is causing it.

He did the elimination diet, swab tests. etc., etc. but to only be told "there is nothing that I can do and you will have to leave it and hope that it goes away".

Hopefully one day, there is a cure out there for all of you (and my partner) who suffer from CIU.

anon65198
Post 21

my husband suffers from CIU. I noticed that the hives raise after every single meal, but subside a bit after he has a bowel movement. He was treated in the past for H Pylori and IBS. Any help? thank you all.

anon64063
Post 20

When I was 13 I got hives for the first time after playing in the grass outside. After that, I would break out every time I went in the sun, took a hot shower, ran, got nervous or angry, or did anything that caused my body temperature to rise. Every inch of my skin would be covered and lasted for hours.

The doctors prescribed medication after medication, including Benadryl, Zantac, and Singulair. Nothing helped. Then they put me on Zyrtec and it was completely controlled. I can do anything I want on Zyrtec and will be free from breakouts completely. I recommend trying it if you haven't already!

anon62610
Post 19

I have been suffering from CIU for the past three years. It began with hives on the bottom of my feet and palms of my hands. It got progressively worse over the next year without any reassurance from my GP.

I then saw a specialist who put me on a regimen of antihistamines to keep it in check and another for severe outbreaks. None of which worked, though atarax has been helpful in allowing me to sleep without waking up to find myself furiously scratching.

I was depressed when I asked the specialist if the hives would go away as mysteriously as they came and he replied "not likely. I have been treating people who have been suffering from CIU, some for 25 years."

Luckily, over the last year I have had mild, spotty outbreaks when I have been stressed, sick, sunburned, etc.

anon62190
Post 18

I am a child who has CIU since about 5 years ago. It started as a rash similar to prickly heat and has since changed into large red welts. It seems to be triggered by everything and nothing. If i get hot, cold, excited, anxious, scared, hurt, surprised, sad, happy, full, hungry, angry anything-- it will trigger them to go off worse. They're always present but get worse at moments like that.

I have to carry a ugly looking pouch with an epipen in it whenever i leave the house. I have been treated by two amazing dermatologists and allergists and the medicine they prescribed me made me very sleepy (the first time i took it i slept for 16 hours straight. and only woke up to use the washroom, then went back to sleep). About the time i got used to the fatigue it stopped helping at all.

anon61128
Post 17

I have had CIU for 3 years, It started one day for no apparent reason. Ive been under the care of one of UK's most leading Immunologists, and he'd got mine under control, for about 6 months i was trouble free so long as i didn't miss a dose. that it until recently when the Medication seems to have become ineffective... I dislike having to carry an EpiPen everywhere I go.

anon61044
Post 16

I developed CIU after getting very badly sunburnt in thailand. I was talking doxycycline at the time to prevent malaria and a side effect is that it makes you very sensitive to the sun. I got very, very badly sunburnt.

that was two years ago and ever since my skin has had chronic hives. Anything can trigger my hives from heat, pressure from carrying something, clothes rubbing etc. It is so frustrating! and i have been trying every over the counter antihistamine and they don't seem to do much.

My dermatologist i saw didn't really seem to give a hoot and just told me that one day it should go away. If it was happening to him I'm sure he would try to find an answer!

I really feel for anyone else who has this because it's very hard to get any help for it. GPs don't really know anything about it. I just keep researching and reading others' stories, hoping i can find my own solution.

anon60962
Post 15

I had this for years as a child and teenager.I finally found relief with Seldane (now taken off the market) and now Allegra (generic Fexofenadine). I take 180 MG in the morning and it helps all day long. I was miserable for years until I used this. It enables me to work, exercise, and live a normal life. I thank God everyday for helping me find this! Try it out!

anon59668
Post 14

Does not feel like we are disables?

How many times i have woken up with half of my face and lip disfigured?

Not been able to drive my self to work because of embarrassment, discomfort, or drowsiness. I take reactine 20mg twice a day. it has helped but I started to notice that when my cycle comes I break out more often.

anon57205
Post 13

I have had hives off and on for about six years now. It would be so extreme and so all over my whole body, including my scalp. My only relief was a cold shower. It felt so good to cool my hot, itchy skin!

The first few years, I thought I may have developed a food allergy (I'm vegetarian). Maybe it was milk, cheese, beer/hops, bread/wheat, but in the end, after paying attention to the cycle, I realized it was stress -- at that time caused by my husband.

After separating from him, as my heart healed, I hived less and less. I still hive a tiny bit now and then, usually when I am stressed and don't even realize it, or am suppressing some strong feeling. I feel it just on my forearm, on my lower back or on my arm or thigh, but nothing like it was.

I totally avoid drama and stress now. Who needs it anyway? Life's too short. I believe people need to relax more!

anon57120
Post 12

I have had this for about 14 years. It doesn't come and go, it is there 24 hours a day, and I take Zyrtec (cetirizine) which controls it completely until the medication wears off again. I have never had a rash or hives with this condition, nor do I seem to have sensitive skin in any way.

If I do scratch however, it will leave a mark/wheal that remains for some time. I am not particularly athletic, so it cannot be triggered by exercise, also there is no pattern. The itching begins from any spot in my body and will just jump around like that until it gets worse all over and I take my zyrtec. It stops within seconds and will last about 48 hours. The itching does not feel as though it is on my skin, but from within and feels hot.

My GP has not been much help either, and I am wondering if this is going to continue for the rest of my life!

anon52319
Post 10

I have been suffering with CIU for almost a year now and it has changed my whole life! I am not sure of the cause but I have been to quite a few doctors and they have no idea what is causing it but I was prescribed a medication called xyzal and it really works wonders!

anon50932
Post 9

I have had a chronic rash for almost two years. I have been to several dermatologists, allergists, immunologists, etc. I was diagnosed with hypersensitivity to unknown cause. The allergist is convinced it is due to drug allergy, but has had no luck determining which drug. The rash is miserable, my skin is sensitive to anything, is always itchy and bleeding from these open papules. We need help! Where to go?

anon48220
Post 8

I have had CIU for the past four years. It seems to be caused by a combination of heat, stress, and pressure on the skin. Because no other allergy medicine seemed to work, I took steroids for some time. Then my allergist prescribed Doxepin. It is an anti-depressant that apparently acts as an antihistamine as well. I take 40 mg every evening along with a Zyrtec. In the morning, I take a Claritin and a Ranitidine. While this combination works for me most of the time, I still have occasional outbreaks, but they are mild in comparison with what I once suffered. I work with someone who also suffers from extreme allergies, and she has been taking Doxepin for some time. She, too, says that it has been the only thing that has worked for her. I highly recommend asking your allergist about Doxepin.

anon44840
Post 7

have you had a breath test for Helicobacter pylori? The same bacteria which causes peptic ulcers in some can cause CIU in others, so taking care of the the bacteria can sometimes take care of the itching. Wish me luck. I get my results soon, and hope that this is the case. H. pylori is easily treated and the itching is supposed to completely stop.

Best of luck to all of you CIU sufferers out there as well!

anon43412
Post 6

I have been suffering from CIU for 3 years now. My allergist prescribed allegra, but it didn't help at all. I also used every otc medication out there, nothing worked. I have done every home remedy you can imagine. The only thing that brings me a little comfort are ice packs. Hopefully sometime soon more research is done on this horrible, embarrassing disease.

anon42462
Post 5

i have been suffering from ciu for about 8 years. i was tested by way of a scratch allergy test which because i have chronic idiopathic urticaria any pressure on my skin produces a wheal or hive. i reacted to everything they put on me. the only thing that gives me relief is zyrtec, which i take once every 2 days. the medical profession has not been much help at all. i was told they don't know what causes it and it will often disappear after some years. basically all they did was give me zyrtec. i have tried elimination diets, hypoallergenic soap, washing powder. the next thing i will try is naturopathy. all else has failed.

anon42031
Post 4

I have been having horrible itching and a terrible rash that is varied over my body, at times it has gotten infected. I have been told that I might have rocky mountain spotted fever, spinal meningitis, scarlet fever, scabies, allergic reaction to "something". But then everyone comes back saying that the test results are negative. I have been treated for almost everything except what is wrong with me. Steroids give me relief but I have insomnia and headaches. I have been to the ER twice, my doctor six times and to one dermatologist three times and then for a second opinion to another dermatologist and also to an allergist, who thought it was nothing to worry about. I am depressed and miserable. Where can I go? lex nc

anon38062
Post 3

I have been suffering with CIU since early 2001. I initially went to immunologists/allergists for diagnosis and treatment. All the doctors tried just about every known antihistamine which did not seem to help...even when taken as a preventative measure daily. My condition varies from mild outbreaks, which I can usually just ignore to severe in which case I resort to corticosteriods as a last resort. Since I've had CIU for so long, I've become somewhat used to the constant itching, burning, swelling, and disfiguring of the lips and eyes. I don't like taking the steroids due to the long-term effects, but when I do absolutely need them, they're a blessing. I, like all CIU sufferers, hope research will provide an answer soon.

shurroe
Post 2

I have just been told by an allergist that I have CIU. I also have CFS. Is CIU something that will help me in my struggle for Social Security?

anon27087
Post 1

Is it possible to be declared disabled due to hives and collect social security?

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