THERE HAS TO BE A CAUSE OF URTICARIA ...

Skin, nail and hair health
1

I absolutely REFUSE to accept a diagnosis of 'Chronic Idiopathic Urticaria' which basically means the medical profession have yet to discover the cause. They NEED to get on with their research. This is a deeply FRUSTRATING, IRRITATING, SCARY, DISTRESSING, PHYSICALLY AND PSYCHOLIGALLY DEPRESSING condition and CIA diagnosis is just not good enough. And most of us CIU sufferers are the type of people who 'don't like to keep complaining', so we put up with the damned itching and also we're too EXHAUSTED with the condition to keep running to the doctor every few days.

GPs don't seem to know who to refer us to. We go for allergy tests, nothing is detected, we're put on antihistamines, they don't work. We go to dermatologists, same thing all over again, all tests are done to RULE OUT this and that, but never to RULE IN. In the UK, there are 'within normal limits' criteria for blood tests. What if you have a body that doesn't work alongside the 'norm'? Your overlooked.

I started with this CIU during a really persistent chest infection which wouldn't go away. I knew exactly where in my right lung the pest was living and yet my GP continually 'couldn't hear anything' with the stethoscope, but I could FEEL something not right. Then I had C reactive protein tests which showed and inflammation 'somewhere in my body' but they didn't know where. I KNEW WHERE.

I suffered with breathing problems and this stupid CIU for 10 months, ended up in A & E several times with angio-oedema and anaphylaxis, now carry an Epipen. The rash eventually subsided after almost a year, but not due to antihistamines because they didn't work, some even made it worse.

But my skin remained itchy all over. So I live with constant itching. Two months ago, the rash flared up, I still have it, been to my GP, given Atarax at first which made it worse. Went back, given Cetirizine 3 a day, Ranitidine one a day plus Monteleukast if that didn't work. Before I had the chance to even take that, I had to be rushed to A & E a few days ago because the rash was creeping up to my throat and head and I felt my tongue tingling and had a fat lip. Put on IV Piriton, steroids, sent home after 6 hours with a 5 day course of Prednisolone steroid tabs. Still had the rash but it went down and for ONE DAY I WAS TOTALLY ITCH FREE. BLISS.

But it's now back again and I'm feeling really desperate. I work in a psychiatric hospital, my job is stressful, I can't concentrate and can't afford to make mistakes in my work. I have no social life because I look like a cross between a leper and a lousy dog! And most days I just feel that life isn't worth living if I have to continue like this. In fact I don't WANT to live if I have to live with this. That's how bad this skin condition makes me feel. And that's what I'm going to tell my GP next week when I see her because they have to really sit up and take notice where this CIU is concerned and stop fobbing us off with 'it's not life threatening, it will pass, it will burn itself out eventually'.

Thanks to all the posters here for their contributions about what has or hasn't worked for them.

2

H I too have had the same problems with treatment < I have spent weeks trying to come of steroids but as soon as I drop the dose , I flair up , My husband found an article on line on a medical sit Linking helicobacter pylori to Urticaria which when found in the system can affect the healing process causing continues flair ups .m y doctor dint want to agree this but I have been given the test and waiting for the results. Hope this info helps

Emis Moderator comments: I have removed the link to the blog site, if any user wants it please use the Private Message service. There is a leaflet here https://patient.info/health/chronic-urticaria which mentions H pylori.

3

Hi Wendy ... I'm sorry to hear you're also having the same trouble. I have gastritis, hiatus hernia and a narrowing in my jejunum and I've been tested for H pylori and it came back negative. I'm not convinced at all that I don't have it. And it's only since I had the gastro trouble that this horrible rash flared up. My blood test C-Reactive protein also always shows up high, which means there is an inflammation somewhere in my body! Duh! I know where the inflammation is - it's in my stomach! But will they listen?

Well after I wrote the above post, I ended up a few days later with the paramedics in my home and back in the ambulance for another stint in A & E. I had IV steroids again plus IV antihistamines but this time they put me on two weeks oral steroid treatment and I felt MARVELLOUS while on them. TOTALLY ITCH FREE for the first time in four years. But once the steroids stopped, the hives began to reappear but I have managed to keep it under control by taking larger than usual doses of Piriton and Ranitidine with GP's permission. But when they start wearing off, the itch comes back, but as long as I take the antihistamines on time, I'm pretty much itch free and rash free.

I have been referred to an immunologist because my GP is not happy with me having to be rushed into A & E when this happens - thank God I have a new GP who listens to me.

I've honestly never felt so well for 20 years. I also have Post Traumatic Stress Disorder and I recently learned that of all things, antihistamines actually help to block out traumatic memories - so there we are! Maybe the rash has been a blessing in disguise. I hope you get to the bottom of your problem too! :-)

4

Hi, I have had the worst 6 months of my life due to an allergic reaction to something that has left me itching all over For months and constant spots and hives.. I have been on 50 mg of steroids and far to many anti histermines just allow me to keep the itch at bay and be able to work. I have put on 1 stone with fluid and have had a non existence social and personal life. My husband and I have researched remedies, purchased every cream and tried unsuccessfully until now to find something that helps. Early this week I took myself to bed with a bottle of whiskey because I had had enough of being swollen spotty and itchy with little or no help from the medical sector. But I can sy within 24 hours and a little help from a friend I have honestly found a cure or well at least a treatment. Please please try Emu oil plus! It is honestly the best thing in the world. If you apply all over it makes you feel odd for about 20 mins, really cold, but I absolutely promise you you will nt itch. It's pungent but it's amazing! I have not had an anti histermines for 48 hours! I was on 8 a dy of strong ones! If I could I would shout it fom the roof tops to help other sufferers! I ave bathed in everything down to detol trying to find a cure and ave visited the octor every week since June but that cream, wow honest,y, where m arms and body were full of spots scabs and hives have gone down 95%. I've even got my steroids down.its available on te Internet and available in different forms but if you want to try it get the Emu plus, it's around 10 pound but worth it's weight in gold. Let me know how you get on because after suffering from this horrendous condition with no help but masking of chemical drugs that never made it go just gave a slight control I want to get this crem out there to help other sufferers. Am I cured? I don't know but I do know, I've had more sleep in 2 days then te last 6 months!!

5

Hi gracle53--

I hope you are still checking responses to your post, as I registered just to answer you. I have had dermatographic urticaria almost my entire life (since I was ten) and when I was young, they told me "someday it will go away." Not the case. 25 years later, I still have this condition. Unlike in your case, antihistamines do tend to work for me but they only cover the symptoms, which come raging back the next day. However, in the last year I have found a diet that has reduced by antihistamine intake from 6 pills a day to 1. It is called "autoimmune paleo" and I highly recommend you look into it. After testing with autoimmune paleo's elimination diet, I realized that this Urticaria is 75% my body's reaction to almost all foods except clean meats and vegetables (I tolerate fruit but not a huge amount). It seems that grains, sugar and lactose are the biggest culprits. The other 25% of my symptoms have not seen improvement, so I consider them to be environmental or genetic factors. This could be the case for you, or even different foods--it has been trial and error for about a year. Urticaria and dermatographism are autoimmune responses, though no doctor will tell you that.

I have done tons of research into why this issue sprang up for me when I was 10 years old and the two things I have in common with several other sufferers are: 1. I had a high amount of antibiotics as a child in response to a diagnosis of facial cellulitis (a form of menangitis) and 2. I was given soy formula.

I truly hope you find some relief. I know how hard this condition can be, especially when it feels like doctors are not taking you seriously or trying to come up with a solution. I wish you the best of luck.

6

Hello! I hope this can help people. I know many many people have been living with hives for decades. I also know that professionals say this is not an allergic reaction. I tend to disagree in my case. I have been suffering from severe hives for the past year and a half. It took a full year for me to track down the source. Yet I am still suffering from hives for a reason. Actually I do agree with professionals that it is not an allergic reaction from the air or any foods or household items you may have changed. I have never been allergic to anything other than poison ivy.

Suddenly I was breaking out in huge welps! They would start out as a simple dot or spot that looked and itched like a mosquito bite. Next thing you know I had a patch that covered most of my thighs... and it moved onto my entire back... to my feet... etc etc. It seems most of the time if one foot is affected, so was the other, if one arm was, so was the other... Note, it has, but rarely hit my face, above my neck or my airways... often the palms of my hands, torso, legs, feet, arms, hips... but generally both sides of my body when it hits one side.

It was not until we bought this beautiful hay to feed our donkeys. Any ordinary hay, such as our own or hay from a neighbor, did no harm. I believe this hay was fertilized with some chemical. I don't think it's the hay itself, it's the chemical they use on it. The hay was too perfect. Once I got my husband to feed the hay, the hives subsided somewhat, yet I still got some hives because I still do his laundry which had contact and I have cats and dogs who are in our barn and I still feed and pet my donkeys, therefore I still have contact... and there is residual hay on the floor of our barn. This is the second year with this hay and as soon as I finish these last 2 bales, we will rake out the barn and buy no more of that beautiful "perfect" hay.

How I treat these hives... I have been using a shelf brand with the active ingredient "Loratadine" 24-hour non-drowsy allergy medicine. It relieves my hives in about an hour for about 24 hours... however the long term effect I am receiving nowadays is my ears ringing rather loudly.

I know this is not a cure for those of you who have chronic hives, but perhaps it helps those of you who have only been suffering for a few months... or perhaps it will give some of you a possible cause that you have not thought of because you could not pinpoint it.

Perhaps once scrape the floor of our barn I will still have hives... but I did not develope these hives until I was 53 years old... I hope within a month or two, I will find the end to them.

I hope this can help someone... and find relief for you too.

7

I also had a rash and itching for several months. Then one night my lips and face swelled up after I had a bag of asian crisps. I looked at the ingredients and the one that stood out was e621 which is msg. This set me on an internet search and I found out about riborash which is like the hives I had. It is caused by flavour enhancers especially 635, 621 and 627. These enhancers are in just about all processed food including takeaway. I then just ate simple foods like meat with no gravies or marinades, fruit and veg and the rash cleared up within days. Its only when I dont follow or read ingredients that the itching comes back.Flavour enhancers are also called yeast extract, hvp, flavours and natural flavours.Soy sauce and promite and vegemite are also glutamates like msg.There is a great website called fedup that explains it in more detail. The worse things you can eat are flavoured chips (crisps) chicken salt, CC's, KFC, Arnotts shapes, pies etc, stock cubes, liquid stock and the list goes on Hope this helps I rarely take an antihistamine now omly if I know I will deliberately eating something with msg or flavour enhancer. P.S. I was not allergic to anything before this year I think FH is in more products.

8

Google "riborash" and "fedup" website You may find you are allergic to msg and flavour enhancers like myself. They are known as 635, 621, 627, yeast extract, hvp, glutamates, flavours and natural flavours and are found in most processed foods such as pies, gravy chicken salt, flavoured crisps, savoury biscuits like shapes, marinated meats, sausages ,CC's, KFC, McDonalds, stock cubes, soy sauce, salad dressings, vegemite and promite and the list goes on. Fresh fruit and veg and meat, rice etc is the way to go. Read all labels and you'll notice a difference in days. Good luck. I never use to be allergic to any- thing but it seems to be in more foods than ever before.

9

I know exactly what you are talking about and the fustration you feel. I have chronic urticaria and delayed pressure urticaria dpu. The delayed pressure urticaria is the worst to treat. I also know that your type is bad where it affects your throat etc. I have been on countless types of medication none have really worked. Montelukaust made me worse all antihistamines are crap cos they never work even using high dosages.  I have been on cyclosporin and prednisone. I had one day free of anything on the steroids that I announced it on facebook saying I was normal.  My friends thought I lost the plot. The only people who know what we are going through is us sufferers.

I found it difficult to hold down my job as a civil servant taking loads of random days off sick. I am sure they thought I was making it up as they don't understand.  Luckily for me a voluntary redundancy came up and I have taken it as I would have been sacked. Not because I am rubbish at my job but because of sickness.  

I barely sleep properly because of my symptoms and my social life is at a more months me minimum.  My leaving do at work is a good example because my feet was itching do much and staring to swell up I had to leave my own do like cinderella.

I am a strong independent person and I have broken down myself because of this. I really don't want to live the rest of my life like this either.  Yes I agree there is not enough research out there about this and I am all too familiar with the feeling of being fobbed off all the time.  And made to feel like you are lying or making it all up because most people don't understand this really uncomfortable frustrating illness. 

Apart from this forum I don't know what is out there for sufferers.  And we can't diagnose ourselves only talk about our experiences.  We need more than this we need to demand that things move on for us and there is more help for us.

 

10

since June I have had this urticaria my doctor first misdiagonised me and had the cheek to call it scabbies even tho it looked nothing like scabbies and no one else around me had caught it not even my child! So after weeks of worrying about scabbies I looked into stress rashes, as i've been going through alot and this looked exactly like mine, my body, my hands , my feet,covered in this itchy rash. So went back to doctors he finally agreed that its urticaria, so he tolsd me take 2 antihestimine citrizine, 1 in am 1 in pm, then a dose of steriods prednisole started on 8 a day, 7 a day & so on till 1 a day for 2 wks, but now my course has finished and bingo its coming up again. The steriods helped massively I only got little bits coming back, but now as i'm not on them its covering my body again, I'm still taking my citrizine tabs 2x aday. I'm gonna go back again to doctors all he keeps saying is can take up 12 months to clear and that I need to relax. Well its abit hard when lifes issues do flare up and then you've got the worry of this very annoying itchy rash which looks horrable, so how can you relax?? It is depressing me now what do I do  next in desperate need im 35yrs and going abroad for holiday in a few weeks dont want to suffer ith this.

11

Antihistamines don't work.  I was eating them like sweets taking as much as 320mg a day. My gp nearly had a heart attack but I was advised by a specialist that it was ok. But unfortunately they don't work.  Steroids I found to be alright but these are not long term.  Ive been on various medications ie dapsone montelukaust ciclosporin etc to name a few. You may come across these at some point when treated but they may work for you but unfortunately they didn't work for me. The itching I had was unbearable and frenzied I was rubbing the area with stuff like brillo pads.  Crazy I know.  I found montelukaust made me worse. Some tablets exacerbate the situation.  I also suffer from delayed pressure urticaria which is harder to treat. It is exactly what it says on the tin. At the time of doing things not affected but as the day goes on whelks appear and my hands and feet swell. Its very distressing that I'm scared to socialise. Nobody understands you and think you are exaggerating or making it up. I have an identical twin sister and we both have it.

Long term you need your doctor to refer you to a specialist. Allergy tests are personally a waste of time.  But a good healthy diet is essential especially vitamin D. 

It affects people differently because there are so many types of urticaria. It does burn itself out for some and others suffer many years if this. I'm just passing on what I know.

There is not much research done on this and the medical profession don't even know what causes it. I know it's easier said than done by stress does not help. I know it's a catch 22 situation. 

I'm sorry I can't give you any other solace or advice that you was hoping for and I don't know how you can look after yourself while on your holiday.  I do hope you don't suffer too much and like I said demand to see a consultant/specialist from cutaneous clinic.  The doctors cannot help with this.

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this is all so depressing !! Ayda thank you for your reply will demand to see a specialist.

 

13

The constant itching (and burning) is miserable - I know as I've suffered.  Unfortunately, it seems many things can cause it.  Being hypothyroid is one - if your TSH reading is above 3.0 and you have other symptoms consistent with hypothyroidism, this is something to pursue (go to the American Association of Clinical Endocrinologists & read their guidelines for treating hypothyroidism - many physicians tell you you *don't* have thyroid issues if your TSH is < 4.5, but that is an outdated view).  Go to uptodate com and read their summary of urticaria; there is also a good summary in the journal Skin Therapy called "Chronic uriticaria and autoimmunity" by Fraser and Robertson (2013) http://www.skintherapyletter.com/2013/18.7/2.html About 40% of chronic idiopathic urticarias seem to be linked to thyroid disorders.

If you're on birth control pills/patches/nuvaring, this also may be causing it, even if you used them successfully without developing the urticaria.  People on the 2nd generation birth control (Yas/Yasmine/Nuvaring) may be more likely to develop urticaria (based on anecdotal reports).  It may take at least several months of being off the birth control for the urticaria to die down.

Some people who have used antihistamines for other allergies have reported that they have developed an itch when they don't use the antihistamine and have to wean themselves very slowly off the antihistamine.  If you developed the urticaria only after using antihistamines, then this is a possibility. 

There unfortunately are plenty of other causal factors. Lupus (an autoimmune disorder) can have symptoms that include urticaria. Celiac disease/gluten sensitivity may cause an itching - it's not clear to me that this is the same as the hives that comes with urticaria, but it's something to think about (an elimination diet can be followed without a doctor's prescription to see if this seems likely).

Also unfortunately, some people never figure out what causes it and it never goes away.  The best you can do is educate yourself (and be careful because there is plenty of nonsense on the internet, too) and then, consult with your physician (unfortunately, many physicians are not very receptive to suggestions from patients, so if your physician isn't, you might want to look for another). 

14

Antihistamines do work for some people, at least to reduce the itching. They do for me.  Zyrtec (or its generic form) was best for me.

15

Hi Mariezz

I have read all the above postings and I can only tell you about my own experience and what I have done about it.

I am from ''way Down Under'' - that is NZ.   My GP - who is a 'young' lady practitioner with a very high competency level.   I will follow her wherever she goes.   She had to go away on a course which took her out of the practice for about 2 months.   Before she left she dropped me an e-mail to inform me of her movements, but at the same time recomended that I read up about Urticaria.   It was the iching that drove me up the wall.   However, I developed the rash in my upper arms and it was red and inflamed.

Earlier in my treatment she prescribed a stronger antihystamine tablet and  a 'Non-ionic Cream'   I am not mentioning the names of the products because the same product sells under different names in different countries.   I have a dietician who takes care of my food intake because I also have severe swallowing problems due to previous oral surgery.   My own approach was to monitor the GI of everything I consume and try to stick to the lowest GI levels.   So, I am suggestion that you also watch what you consume.   Secondly, I coated my entire body at least once a day with the 'non-ionic' cream which re-hydrates my body and soothes the itching.

Well, GP is back and I saw her today.   She could not believe what she saw.  Her diagnosis as well as her prognosis was obviously spot-on.

I will continue along this course and just keep myself as comfortable as I can.   

Hoping my input will assist others in finding comfort

Jasper

16

I have had 3 bouts of urticaria in the past 3 and a half years the first lasted 8 month the second lasted 6 week and the third has lasted 7 week and counting. The worst time I had it was the first time and everyone who has the itchy burning sensation of urticaria can appreciate how life controlling it can be.

The first time I had urticaria I could tell I was going to get a bad episode because I would develop chest pains then 30 minutes later I would break out badly with the usual rash has anyone experienced this before?

When I get urticaria now I can usually tell beforehand because my toilet habits change, I have found that I don’t frequently go to the toilet enough to defecate has anyone experienced the same problem? Also I develop bags under the eyes and also notice that I shed skin a lot more than usual I can usually tell this from taking my socks off and noticing dead skin inside the sock around the ankle areas but usually this effects all of the body as well, has any one had the same issues as me?

I often wonder what could cause a disease  like this and often wonder if it could be due to some kind of an insect bite that has the same character of infection similar to malaria from a mosquito, does anyone else have this kind of theory and could something like that cause this recurring urticaria in human beings.

17

Have you looked In to a possible mast cell activation disorder, there are papers online by a dr afrin in the usa that describe the wide range of symptoms which seem to encompass many of yours and indeed the other commentators.

regads

gawain

 

18

I too have been suffering since June ... Been on 180mg fenofexadine but still gettin hives everyday on hands, arms  legs...some days just tiny red spots, other days large red welts. Not entirely sure what the fenofexadine are doing?

ive had blood tests and allergy blood tests all of which came back clear. I have an appointment with an nHS dermatologist on Oct 31 but I really don't know what a dermatologist can do as I'm certain it's something internal. I recently had a holiday in Spain and that week was the worst I've had and I have no idea why. Every morning my legs, hands and arms  would be completely covered in large bright red welts. It was awful and ruined the holiday. Antihistamines weren't doing anything.

people don't understand how depressing this is and just say stop worrying about it ... But how can you stop worrying when you don't know why you're getting them and you have no idea what they will be like day by day.

i just want to cry and hide away ... So fed up with it now.

19

On my first and worst episode of urticaria I too was put on fexofenadine but I soon realised that it was making the symptoms to a great extent worse and the only way to control it was with a mixture of antihistamines (chlorphenamine) which you can buy cheaply from Asda and prednisolone (steroid) 5mg prescribed by the doctor, even then there were times when the urticaria was extremely stubborn and just had to flare up massively for at least 24 hours. I too went to see a dermatologist on the NHS and had all the relevant tests what they give but nothing abnormal showed up and the dermatologist put me on a course of Dapsone tablets 150mg. Personally I don’t think this did much and the problem with taking the drug was that you had to go for a blood test every week which was a pain. Anyway after 8 month of this awful disease that literally controls your life and doesn’t allow you to plan for anything from one day to another, the urticaria must have run its course and things felt great again I was back to normal.

Hope everything go’s well for you and don’t let this beat you down I know how it feels “good luck”.   

20

Thank you for your reply Sharky... I'm just having a bad night after a bad day so it's got me down a little. To top it all off I think I have one now appearing on my neck where they haven't ventures before which I've been grateful of!

I don't know about you but I find myself avoiding any foods that people say are high in histimine even though I have no food allergies... Getting paranoid that I can somehow make them worse!

I stopped taking the fenofexadine when they got bad on holiday at the end of September and am taking piriteze now...  They haven't got any worse since stopping the feno, but they haven't got any better either!

I'm glad yours up and left you after 8 months and can only hope mine do the same. To think that this could go on for years is a rather depressing thought and I feel for those that have suffered that long!