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HELP!!! Chronic Urticaria - anyone suffer? anyone have a clue what causes it?

(42 Posts)
EvanMom Wed 23-Jun-04 00:06:47

Hi - never posted on this board but thought I would tonight as I am itching like crazy.

I have a dreadful skin condition that is kept beautifully under control by taking 10mg Atarax every 3-4 days. I have had chronic urticaria for almost 10 years now and have taken antihistamines every week for that long.
If I don't take the drug my life is unbearable. As soon as I get a tingle anywhere on my body I take a pill. If I leave it, after a few hours, places I didn't even know I had start itching (inside ears, behind the eyes etc) I come up in raised white lumps, streaks and weals all over my body. The more I scratch, the more white lumps come up. After a few minutes of attack I look like something out of a horror movie.

I have lived with it for so long that I am used to it and more often than not I take the antihistamines before it becomes too much of a problem. I have had numerous appointments with skin specialists over the years and noone has a clue as to why this happens (one suggested autoimmune?). My sister has EXACTLY the same problem... chronic urticaria coupled with dermographism (sp?). The dermographism bit means that I can write my name on my skin by very gently scratching with one of my nails - after a few seconds of having scratched, up comes my name, bright red on my skin. It used to be my party trick - not so funny now after so many years.

Anyone know what I go through? Anyone know what causes it? I am fed up of taking anti-histamines. Atarax is only recommended for 3 months (admittedly I take a low dose) - but I can't function without it and have taken it for 10 years.

Maybe one of you ladies knows more about this? If only I knew what caused this?

Snugs Wed 23-Jun-04 00:17:13

You certainly have my sympathy EvanMum. I suffer from urticaria, but not to the same extent - I can manage without antihistamines except on my worst days.

Interesting that the specialist suggested automimmune problems. I also suffer from chronic iritis (eye condition) and tendonitis (swelling of the tendon sheath, causing extreme pain on movement) - both are automimmune conditions. If I understand it correctly in basic terms it means your own body is fighting itself, your immune system is overreacting.

I am sure there is a link between them all, but my GP won't even consider it, so I am no nearer finding an answer - or a cure for any of them

soapbox Wed 23-Jun-04 00:21:38

Both my sister and my DD have suffered from this. I am about to have supper so can only be very brief!

Both of them had homeopathic treatment and in all the time since then (15 years for sister and 4 years for DD) have never had another occurrence. This from a situation where life was becoming severely debilitating. I lost count of the number of times I was sent to A&E by our GP, with steriods etc being pumped into my DD).

Conventional medicine appears to offer little in the way of long term solutions except for steriods. It really may we worth giving it a try.

As you know the cause is likely to be an allergic reaction and there are some likely candidates, tomatoes, blackberries, preservatives and flavourings etc, but it can take a long time to find the trigger. With our DD we suspect it was a fairly common orange squash ingredient.

Good luck - I hope you manage to get it sorted out

marthamoo Wed 23-Jun-04 00:24:07

Much sympathy, EvanMom, it's hellish isn't it? Ds1 suffers from urticaria - very badly last summer, he had to take steroids at one point. It has been (touch wood) more manageable this year - we have been OK with a daily antihistamine, and haven't had to see the GP. When we saw her last year she did say, that if ds1 kept breaking out to the same extent, she would refer him for allergy testing. Can you ask your GP about this?

I used to get urticaria many years ago (late teens, early 20s) - mostly on my arms, neck and jawline, and it usually happened when I got very hot. I don't get it at all these days though (I also used to be allergic to nickel, and that has stopped too) - don't know if that has any relevance but it can just *go*, IME.

Good luck.

misdee Wed 23-Jun-04 00:26:28

soapbox, would that be tartrazine? we think that is what causes dd reactions, not to the colouring itself but by causing her body to go haywire and react to harmless substances. atm she is on loratradine, which is keeping itn under control most of the time (5ml a day) but as this is her limit on it, by the afternoon it wears off and her hayfever gets worse.

soapbox Wed 23-Jun-04 00:30:01

Misdee - yes thats what we suspected, although the worst reaction she ever had was to an orange ice lolly (calypo) which appeared not to have that as an ingredient. So we thinks its definatly orange squash/orange lolly related but not sure which ingredient exactly!

Rocks organic squash doesn't have the offending ingredient, whatever that might be, so she can drink that!

misdee Wed 23-Jun-04 00:32:10

i think tescos own brand is tartazine free as well, but will have to check that. i have been trying to keep her orange intake to a minmum, but have no idea if itsb working as she is on the anti histimines. i dont want her to be o n them full time (atm has been on them since feb) so will ask her specialist about elimanation diet at next appt.

EvanMom Wed 23-Jun-04 00:34:16

Thanks all,

Funnily enough, the only time it eased was during my two pregnancies. Both times it came back about 3-4 months after delivering.

I worry that ds1&2 might get it. It can be hell.

I have gone through periods int he last 10 years where I have eaten very little and the attacks have been no less frequent. I really do not think it is related to food. Whatever I eat I can pretty much time the onset of the next attack - always *exactly* three days since I took my last Atarax tablet... whatever I have eaten or drunk.... very strange...

misdee Wed 23-Jun-04 00:37:38

if mieow was about she might be able to help a bit more. since the birth of her dd2 she has suffered allergic reactions that are painful and itchey. i know she has been sent for tests, and i think they norrowed it down to a virus thawt has messed up her body somehow. i think she is back tomorrow, and will try to remember to point her in the direction of this thread b4 i disappear off on hols.

foxinsocks Wed 23-Jun-04 00:40:53

Evanmom, that sounds awful....

I've put a link to the patient support leaflet. You've probably seen this but just in case you haven't. I found this site useful when I was looking up dh's skin complaint and it has a lot of useful info on it.

patient support info chronic urticaria

EvanMom Wed 23-Jun-04 01:15:53

foxinsocks - thanks for that link!!

robinw Wed 23-Jun-04 09:30:11

message withdrawn

gloworm Wed 23-Jun-04 10:14:44

For urticaria you could try Bioforce Urtica, it comes in drops you add to water/juice and take 3 times a day.
i'll try to find a link.

for auto-immune conditions try Devils claw...also in drops by Bioforce. It will help regulate an over-actice immune system and encourage your body not to over-react. It will take several months to work.
Dont worry if most of the info on Devils claw seems to talk about rheumatism...this is just the most common typr of auto-immune disease. Devils claw will help most auotimmune conditions.

gloworm Wed 23-Jun-04 10:36:54

info on urtica

fotgot to say you can also drink nettle tea, but the drops are much handier.

fabarooney Wed 23-Jun-04 11:00:56

Hi EvanMom,
Dd1 suffered from terrible urticaria about 18 months ago. She was having an attack about once a fortnight for six months and in the end needed fairly significant doses of steroids and anti-histamines to control it. We were living in Australia at the time so we were referred to a paediatric allergist pretty quickly. He did all the skin prick testing and found out that she had no identifiable allergies to anything in particular.

In his opinion, the urticaria was being caused by her poor skin quality - she has bad eczema. He said that when her skin gets dried out and very thin, it becomes much easier for substances to penetrate her skin and trigger off the immune response causing urticaria. Even the average person in the street, if they left some mashed up strawberry on an arm for long enough, would find the skin underneath starting to flare up.

It definitely made sense to us, her eczema flares up when she is stressed or run-down and the urticaria quickly followed. It also explained why it was particularly bad in winter because in summer she was covered in sunscrean which also acted as a barrier for her skin. We started a skin management programme to try and improve her skin quality and make it less irritable - lots of moisturiser, no soaps, hypo-allergenic washing powder and no fabric softeners. Things have really improved for her. If you have particularly dry or sensitive skin, it may be that this is allowing irritants into your system. Perhaps you should mention this to a doctor and ask to be referred to an allergist.

Hope things improve. Dd was beside herself with the itching so I really feel for you.

Portree Thu 24-Jun-04 23:06:52

Evanmom, poor you - that sounds awful. This may be a curved ball but I thought I'd throw it in. I know you said that you don't think it's food related ... Could you have an intolerance to the histamines that are in certain foods? Have a very LOW level of tolerance to naturally occurring histamine? I wasn't aware of this intolerance but came across it in one of my books - 'Dealing with Food Allergies' by Janice Vickerstaff Joneja, PhD RDN.

Symptoms indicating too much histamine can be: stuffy, runny nose; irritated, watery eyes; hives; swelling of facial tissues; itchiness especially of eyes, nose ears and skin; headache.

The following are all histamine-rich foods: fish and shellfish, egg, processed meats, fermented milk products (cheese and yoghurt), citrus fruits, cherries, grapes, strawberries, apricots, avocado, raspberries, pineapple, raisins, tomatoes + ketchup, soy + soy products, spinach, red beans, aubergine, olives, pickles, tartrazine + food colours, preservatives (benzoates + sulphites), cinnamon, vinegar, curry powder ..... and more.

Book also says "Symptoms occur when the enzyme system that breaks down histamines cannot keep the histamines at a 'normal' level, Urticaria and angioedema are symptoms that occur in response to excessively high levels of histamine in the body ..........Histamine is the only proven inflammatory mediator to cause itching".

There is also lots of detail on how to have a histamine-restricted diet which would take up too much room here.

Portree Thu 24-Jun-04 23:11:55

Oh, and about tartrazine, apparently it makes the body release histamine.

EvanMom Wed 30-Jun-04 23:48:57

Thank you all - there is some really useful stuff in here for me to try out...
I'll post back if I get some good results!

aloha Thu 01-Jul-04 00:22:16

You were better in pregnancy because you have a reduced immune system when pregnant.
I have a weird and unpredictable histamine reaction to exercise - even a gentle walk sometimes makes me itch all over and feel breathless and sick, so I totally sympathise as yours is a million times worse. Ds also has had two attacks of huge hives all over his body and had to have steroids in A&E. I must go the GP and get him referred for allergy testing, but wonder if it is connected to my odd reactions.

Ameliasmum Tue 13-Jul-04 14:22:56

I was pleased to find this thread because I also have chronic urticaria. Mine manifests itself in red blotches all over my arms and legs. It drives me crazy with itch. I have been to every doctor I could think of and the only thing that worked were antihistimines. But I refuse to live on them, so stopped taking them, and I am going insane.

I tried cutting various food stuffs out of my diet but nothing worked (although I did lose lots of weight after cutting out wheat).

Now the worst is my poor 7 week old dd has eczema, mainly on her face and behind her ears but also lightly all over her body. The paed prescribed a mild cortisone cream which worked but again, I don't like using cortisone on such a small baby.

Any other suggestions for either of us?

sleeplessmum2be Wed 14-Jul-04 09:20:48

Please forgive me for not reading the whole thread as just do not have time but have you tried Homeopathic Urticaria. You can get it from Ainsworths or Helios and has been a life saver for us every time our now 4 year old has had unspecified rashes and patches and stuff!!!
HTH

Ameliasmum Wed 14-Jul-04 11:08:11

Hi Sleeplessmum2be
I am willing to try anything. My rash is itchy and unsightly. I look like I have a disease. Unfortunately I live in Vienna so don't have access to those shops. Luckily, I have friends who go often, so will ask them to bring me some. Let's hope it works.

jaijai Mon 09-Aug-04 16:54:13

Hi
I did search the other entries but could find no match so can anyone help.
I am 8 weeks pregnant with urticaria, itchy raised hives on skin. Is it safe to take any form of antihistamine while pregnant. Even my docs cannot agree.

Thanks

honeybunny1 Tue 10-Aug-04 00:17:03

To all you ladies suffering from this terrible skin disorder - nettles are a natural antihistamine - don't know if that is any use.

Also ACONITE is very good for prickly heat which itches like hell. Also RHUS TOX and ACONITE are good for blisters with SULPHUR good for blistered skin.

On the more contemporary side ZYRTEK (antihistamine) has helped my sister and I for the last year or so with the itching attached to chronic HAYFEVER.

Also try www.homeopathy-soh-org for further info.

Hope you get some relief

honeybunny1 Tue 10-Aug-04 00:24:29

Stop the clock jaijai and log onto www.weleda.co.uk. Go into the remedy finder and there in all its itchy glory is URTICARIA and how to treat it. Now you will need to consult an qualified homeopath to discuss treatment but I sure hope this helps.

Best of luck with baby.

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