Living with chronic urticaria
Chronic urticaria (hives)
Want to know how to cope with chronic urticaria? Who can you turn to for help with dealing and possibly curing it? What causes urticaria and is it ever worth paying lots of money for a miracle cure for it? These questions used to turn around my mind; trying to pin down one place, I could get the answers, was difficult.
My husband suffered terribly for years with chronic urticaria, leaving us both feeling frustrated and angry with the lack of information out there. What we could find, was from different sources which involved lots of cross referencing; some websites even offering miracle cures for a cost. I am sure that if you have been, or you are suffering from this awful condition, that you have asked yourself these questions over and over again.
I have created this page, using the information I sourced, that I hope will help you get the answers that you need to move forward and cope with living with this condition. Amongst the information I will tell you about our experiences, remedies we have tried, money we have paid out and hopefully enable you to gain an understanding of the difficulties it causes for both the person with the condition and the people in their lives that care.
There wasn't any page when I was looking, (and I trawled through the internet for weeks, hours at a time!) that had compiled the information so this is what I hope to do for you.
When you are desperate, itching and in pain, the last thing you need is to pay a website for information that swears it will help you, only to be let down when you receive it and realise that you already know the information. This page is free to read and the information will hopefully help you.
Do you suffer from urticaria/hives?
Do you suffer from urticaria (hives)?
What is chronic urticaria
I am not an expert on chronic urticaria but I have gathered a lot of information and these are my findings.
Urticaria, also known as hives or nettle rash, can be acute or chronic. About 1 in 6 people will have acute urticaria at least one in their life; a rash will appear because of an allergic reaction and will last for less than six weeks.
Chronic urticaria is a rash that occurs on most days for more than six weeks; this occurs in about 1 in a 1000 people, more likely in women and can in some cases last for years. In about a third of cases it is an autoimmune problem, the body's anti-bodies cause the problem, they cause the body to release histamine, the body's natural defence, and the reason for this is unknown. It can be caused by an allergic reaction or there can be a physical cause of urticaria.
The rash can affect any skin on your body.
Wheals, which are small raised areas, develop on the skin and if they are close together they can form one large wheal. They look like blisters and itch constantly. They can be any size, any shape and anywhere on the skin, red or white in colour and usually surrounded by a red area of skin called a flare.
Each wheal has a life cycle of about 24 hours, however as one fades another can appear so it can feel like a never ending attack on the skin. When they appear on the face, they can completely close your eye, they can cause your lips to swell and at times your face will be swollen. This can be an uncomfortable time and not only are you itchy with possible restriction on your sight or other senses but it can make you feel very alone and not want people to see this very obvious looking condition.
It can all sound very clinical when you read it but the welts are very real and no words to describe them can explain the distress that a person goes through with them. I remember my husband becoming very despondent and withdrawn; it was a very dark time. I just wanted to explain what they were before I go into any of the other information. I will also add links throughout this page to sites that I found helpful. I have shared our experiences, saying what worked and didn't work for us.
We have used the first book and it was ok although more about keeping a diary than cures.
The other two are recommends from someone else but they seem reasonably priced.
Urticaria is an itch that can never be be relieved by scratching that is so often painful.
The skin can also swell causing loss of vision, hearing and use of the body, also can restrict the windpipe.
More understanding is needed and more empathy when someone asks for help
I say possible because there is a lot of speculation on what the causes are; I have found no definite answer, each person is a unique case and sometimes like in the case of my husband it is his immune system which was attacking his own body, for no reason the doctors could find.
However I would always suggest going to the doctors, who should in turn refer you to a skin specialist. They will probably conduct tests to check for allergies or known causes and then often the treatment is a course of anti-histimine tablets, in a dose that is specific to you. as I am not a doctor I will not add a huge amount more about that.
Causes that you could look for are as follows, a food that is causing an allergic reaction, a washing powder, a soap, grass, animals, SLS (sodium laureth sulfate), paper, chemicals and many many more. As you can see there is a wide variety of things that can cause urticaria and to eliminate them all from your life is in itself not only impossible but also very distressing.
We started eliminating foods that are naturally high in histimine, tomatoes, strawberries, eggplants, spinach, cheese, milk, wheat, eggs and fish (unless caught and cooked almost immediately). Be aware that if you cut it all out if you are trying to determine which it is when you reintroduce them, do it one at a time for a couple of weeks to see a reaction if there is one.
It may be worth checking for coeliac disease as this can be one of the symptoms. I paid a website Â£12.95 when we had got desperate for a cure to find this out, don't pay for information, everything you need is out there for free, they do not have magic cures.
We started to use a toothpaste called squiggle; which incidentally I was using as a cure for my ulcers, as it did not contain SLS and our shower gels and shampoos.
Your doctor will work with you on this and alternative practitioners will too, homeopaths, herbalists and chinese medicine practitioners to name a few, listen to what they say but make sure that they also listen to you, it is your body!
Symptoms of Chronic Urticaria
Want to know the symptoms of chronic urticaria? They can be many and vary from person to person. These are described in my own words and experience so click on the links below for the medical findings.
The most obvious syptoms are the welts and weals that appear on the skin, often raised, red and very itchy; they can be anywhere on the body and any size. Rashes that contain these appear on the skin.
Swelling; most commonly in the face though can be anywhere. In severe cases this can restrict breathing so always have it checked out in a hospital if you experience this. Eyes, lips and cheeks swell up causing temporary distortion of the face, restricting sight at times.
Depression; not only does the endless itching and the constant irritation cause the person to become withdrawn through frustration and pain but also we were told by the doctor that the chemical imbalance can cause actual depression.
Places to get medical information.
There are some helpful and informative places on the internet that can help you understand this terrible condition. I have added some of the ones that I have used.
- About - DCTN
The UK Dermatology Clinical Trials Network (UK DCTN) was formed in 2002 with the aim of conducting high quality, independent, multi-centre clinical trials for the treatment or prevention of skin disease. It involves a collaborative network of dermato
- ICUS | International Chronic Urticaria Society
The International Chronic Urticaria Society (ICUS) supports a cyber-society of people with chronic urticaria (CU), or hives. Chronic hives differ from acute hives in that the cause is not often determined, and many people suffer from CU for years at
- Patient UK - Chronic urticaria
This is a very clear site and explains it in plain english.
It can be hard to live with someone with Chronic Urticaria, ensure you BOTH have a good support network.
INFORMATION SHOULD BE FREE - DO NOT PAY THE SCOUNDRELS PREYING ON YOUR DESPERATION FOR A CURE
Information to cure illness should always be free
For every illness there is someone peddling a miracle cure or ways to solve this problem. We clicked on one link that charged us about Â£12.95 stating although it was not a miracle cure that the person had gathered all the information that you could want in one place. Hoping they had researched something that I did not know about and my husbands skin was so bad, we paid the money.
What I received was a file to download and the earth shattering discovery within it's pages? The fantastic research that she had discovered? Just that it can sometimes be an allergy to gluten and that you should get tested at a doctors, I already know this and I am sure that if you didn't before now, I have told you for FREE!!!!!
Every person has a right to make money, I however do not think it should be at the expense of people that are in pain and suffering badly. In some of the worst cases I have read about people are unable to work and their quality of life is so low and these are the people that these websites are targeting; I do not think it is ethical, moral or fair.
I hope that you have found your way here first, i do not ask for your money; I just want to pass on the information and advice that I have gathered, I truly hope it helps you.
I will be adding a guest book for you to share ideas that have worked for you and like a plant I hope we are able to create a community as strong as a tree."
Sometimes you need to be alone..... - .....and other times you need to feel part of something.
Chronic Urticaria is something that you cannot understand unless you have it. I have a different viewpoint to my husband as living with someone with Cronic Urticaria can be so heartbreaking and frustrating but living with it is soul destroying. This is a link to a site I used in the past, sometimes you need to know you're not the only one.
- Healing well community
This links onto the thread for chronic urticaria and is a place to talk to others who understand.
Soothing the itch
A cure is the ultimate goal but on that journey, there will be many an itchy and painful day, sometimes having different ideas to try to help soothe your skin a little can give you temporary relief.
I came across so many strange ideas for helping to sooth the skin, some worked for my husband, some didn't. I'm going to include all of them as everyone is different and I am hoping that one of them will help you.
1. Anti-histimine creams, this can take the edge of the itch though it can get very expensive if it covering a huge expanse of skin.
2. Urtica cream - a homeopathic cream that you can buy in a big tub for Â£19.80 from Ainsworths, they come in smaller sizes too though if it is for most of your body, this is the most cost effective. We used Ainsworths for the cream regularly and have added the link to the picture, click on it and it will take you through to their page. My husband said that this was one of the best creams and numbed down a lot of the itching.
3. Bicarbonate of soda in water, applied to the skin with cotton wool. We tried this and it made some difference but it was messy and the effects didn't last long.
4. Bach flower remedy - crab apple. Take dose as recommended and add to water and apply to skin. We tried this and it had some effect, it took a couple of days but there was a definite reduction in itching. can be bought through a local bach remedy practitioner or at an online store such as Ainsworths.
5. Aloe Vera, either in a cream or in a natural essence in a bath.
6. A lukewarm bath, this did ease it for a while though the effects wore off and it was not that pleaseant in a luke warm bath.
7. Olive oil on the skin can ease the itch.
8. Put about 2/3 rose water in 1/3 vinegar and apply to the itching areas. We never tried this so cannot say for against it.
9. Boil mint and sugar syrup and drink it daily. One that several people swore by again not tried by us.
10. Drink apple cider three times a day. We did try this and my husband hated it so much that he stopped after three, no idea if it helped but it made him feel sick.
What works best for you?
What has worked for my husband
He was on 9 strong tablets a day and still he would have outbreaks most days, often he was in pain and he was constantly itchy. We had seen a homeopath who had started to treat him with urtica urens and it had started to work initially but soon came back, I do not fault the practitioner or homeopathy, I know people have said it worked for them.
We next went to see a chinese herbalist, who explained that in China, hospitals use both traditional and chinese medicine in conjunction with each other. The herbalist stated that both practices complimented the other and aided better healing within that person. We had got to a stage where we would try anything. As my husband had been taken off his sulfasalazine tablets a couple of months before, we were not sure now if they had anything to do with it as previously believed. The herbalist who was very practical explained the process and the costs involved, it was Â£30 a session and the herbs would be about Â£20 every 2 weeks. It seemed like a lot but we wanted to try it, chinese medicine has a strong success rate with skin conditions.
My husband had his first session; he was told that it was likely to have been the sulfasalazine and that his immune system was now so sensitive that the anti-hisitimines could no longer suppress the flare ups of the wheals and welts. He said the long term plan was to enable my husband to stop taking tablets and not be taking herbs for good but in the short term, he was going to calm his system down to stop the constant flare ups. We went home to boil the herbs, which was a lot of effort but if they worked I would have done it for life.
Working with the herbs continued
After a week, my husband noticed that the flare ups had diminished somewhat; even having a couple of days with only one welt, this was a major change. After two weeks we returned to the chinese herbalist and my husband was able to tell him that he had had his first day with no urticaria flaring up, it was the first of many turning points.
It was explained that the body was still having the allergic reactions but the concoction of tablets he was on was suppressing it; if there is no other solution, tablets can be the only thing that can make life bearable for urticaria sufferers. He was given a slightly different make-up of herbs and to return in two weeks, which he did, having only one flare up in that time. The herbalist said that he would be happy for us to approach the specialist my husband had been seeing and discuss reduction of tablets. As we worked in conjunction with both, this was possible and he was given the go ahead to start to reduce them down, he was under the supervision of both of them.
Over the next eight weeks he changed from the boiled herbs to the powders, easier and cheaper, and he reduced his tablets down to two a day and his skin was fine, no hives, no welts or itching, it seemed like this was the perfect solution. We were now seeing the chinese hebal practitioner every three weeks and was going to reduce the last couple slowly, over thos weeks he reduced it down to one, it felt wonderful; he suddenly felt more normal.
After the next visit he was advised to cut the tablets down to two days taking one, one day not until we next saw the hebalist. However as it seemed it was all sorted now, only a matter of time til he was tablet free and he chose to reduce the amount he was taking quicker than advised. A couple of days later he noticed he had urticaria on his arms and then again the next day on his legs. We went back to the herbalist who changed the herbs and increased the tablets to one a day again. this worked fine and the welts went away.
It was decided that he had tried too quickly and it would be a much slower process from this time.
How it is today.
He has not had any signs of urticaria for 4 months which is wonderful. He is still taking the herbs and one tablet every three days. It feels like a really long journey but we do see an end in sight, this is not going to be the answer for everyone but it has been the solution to my husbands condition.
7 years of suffering and not knowing if there was an end in sight and finally he is able to do everything with more energy and a smile.
He has had a slight flare up when he missed his herbs for a couple of days but has since gone when he restarted it. It is a great feeling knowing it has now been seven months, each day seems brighter.
1st January 2012
It's a new year and hopefully a new chance to overcome this frustrating condition. I have no other insights per se although recently against my judgement my husband had tomatoes and his skin flare up somewhat, this was coupled with again a few days of not doing his herbs.
I remember his complacency in my own history and it's up to everyone how to look after their helath but he's back on the herbs, tabvlets reduced even further and no flare ups for the last few weeks, crossing fingers this is the beginning of the end.
I am wishing you all well for 2012 and please leave a message if you want to ask anything or just want to talk to someone, it can be such an isolating condition that is easily misunderstood.
One year on
Today, my husband is on 1 anti-histamine 10mg tablet every other day, although there have been a couple of times when he has taken them every day if he has a flare up.
The herbs still appear to be working, although i thought they would be further on than where we are. Another issue that has been highlighted is that my husband works with metals and chemicals and due to his job will often scratch himself. There is a strong possibility that these are getting onto his skin and in through the scratches causing these flare ups so he is now wearing long sleeves in an attempt to alleviate the issue.
He very rarely has any problems now although i do notice when it gets bad as before hand he becomes very agitated and depressive, not fun to live with at all. I just want to make it better and it is more frustrating that neither one of us can do anything about it, just have to wait for it to go again, luckily these are few and far between.
There have been some heart-breaking accounts on here and any advice or information that I find I will put on here as it is deplorable that anyone should pay for information from those who prey on the weak.
The picture is of the Blue Poole in the UK where we had a fabulous day, something we couldn't have done when my husband was very bad, these are the days that are worth so much.
I wish you all well and success in tackling your urticaria.
Unfortunately for my husband he has yet been able to stop the tablets altogether and had a small breakout when he was stressed. Also he neglected to do the Chinese herbs for about three months, I think he was just fed up and had to increase the tablets up and had a few breakouts.
He is back taking the herbs and down to one tablet a day, he has also reintroduced tomatoes occasionally and this does not appear to be affecting him yet although the tablets may be affecting this.
Overall things are still good and he is struggling less with everything, the itching has pretty much been eradicated except on these occasional flare ups and even then it is only a couple of hives.
I hear lots of stories on here and other help pages and it breaks my heart that they people have not been able to alleviate the suffering. i hope they continue to keep trying and keep on going back to the medical community because the more awareness there is about the condition, the more likely something else will be done about it.
I hope you are feeling better about the cooling weather in the UK (unsure how it is the rest of the world at present) and take care.
Still going strong
My husband's skin is still so good and he has stopped the herbs. In the last 8 months he has had two anti-histamines when he had a small outbreak but nothing since then. He has continued to be careful and keeps foods with high histamine to a minimum but he does have everything still, he was most pleased about the reintroduction of pizza, bless him!
He no longer suffers with depressive moods and feels good in himself generally. There is such a turnaround on his mood and life that it is great to see. I am aware that people do have flare ups later on but I hope that we will have a way to deal with it, mainly I am crossing fingers that the herbs calmed his autoimmune system down so much that there will be no future issues, though as everyone is aware there is so little known or being researched that anything can occur.
I hope that you are all getting the help you need and feel free to message here whenever you want or need to.
The Chronic Urticaria has not returned although if my husband still keeps to minimal amounts of food with high histamine. There have been many suggestions on here from other people and some harrowing distressing stories, I hope that having heard from others that a small measure of peace can be found.
Please leave your comments or anything you want help with or just talk because you need to.
As we all know there are many things that people will swear by and others say it does nothing for them. Maybe by leaving what works for you, you'll be helping someone else who never thought of trying it. Also this will build up a great source of alternative things to try alongside your medication.
This is a terrible condition and being alone is awful, leave your name and be part of a community where you are not alone.