Slightly off topic - Chronic Idiopathic Urticaria.

Hi everyone,

I know it is slightly off topic but I wondered if there was anyone else here who suffers from chronic idiopathic urticaria? I've had this for around three years now and currently experiencing my worst flare up for over a year. I'm currently on Piriton 3 times a day, Cetirizine 2-3 times a day and 15mg of Pred daily. Nothing seems to be having an impact at all so if anyone has any hints or tips or similar experiences it would be great to hear from you!

My GP is aware of this condition and I have been under the treatment of an Immunologist at a specialist allergy clinic, it's just driving me a bit mad at the moment!

Sparkly Fairy

28 Replies

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  • hi sparkly fairy - i sympathise. i have bad ezcema at mo and pickly heat - feels like things crawling all over and biting here and there, i also have been taking piriton like there's no tomorrow but I know that they do actually make me itch (is a side effect of them apparently on packet) as well but they are the only antihistamines I know that take the main itch away of urticaria. someone did suggest to me to try calamine lotion but as i have it all over i'd have to bathe in the stuff - i just try to cool my body down - wet flannels, cold drinks etc.

    sorry i cant suggest anything more helpful- just to say thinking of you itching away.

    hope you feel better soon

    jackie

  • I have urticaria. (Hives which appear for no reason)

    Does pressure make it worse??

    I'm on telfast and pred and get breakthrough symptoms on lower doses of pred. Can't offer any help sorry but can empathise cos it drives me nuts more than my dodgy lungs!

    Only thing i've noticed is if breathing good skin a nightmare and other way round like being on a see saw, pick an ailment!

  • Hey thanks marmite its good to know there is someone else who experiences a similar kind of thing. I guess not that many people have this problem, GP is certainly finding it challenging. Pressure doesn't seem to make it worse, heat aggravates it if it's already there and cold sooths it a bit. I was prescribed Telfast yesterday but I couldn't take it as it's got colourings in and I'm allergic! Ended up at out of hours with facial swelling at 11pm last night so pred been put up to 40 until I see GP again on Thurs. I would usually agree that chest is ok but skin rubbish but since the swelling last night I've been a bit wheezy, ho hum best go and write some essay and put a wash on. xxx

  • I don't get urticaria but when on low dose of steroids my skin plays up with patches of excema and general itchiness - I keep thinking sometime I have picked up fleas, but often it is just animal fur contact.

    High steroids & skin is OK!

  • I thought I'd bring this back to the top incase anyone else has any thoughts or suggestions.

    I'm entering the third week of my current flare up and now have urticaria on my neck, back, chest, arms and tummy and a little bit on my face.

    The flare up began 4 days after a hospital admission for anaphylaxis on the 10th of March. I was readmitted for IV's when the urticaria suddenly worsened and was accompanied by angiodema (face, lips and throat swelled), following the second admission the flare up temporarily disappeared whilst on 20-40mg of pred but soon returned after the steroids were finished.

    My urticaria problems were diagnosed by an immunologist in Leeds who didn't have any answers as to the cause at the time and after seveal appointments I decided not to go back. At this time the urticaria was in remission but I assumed it had gone for good until it returned just over 2 weeks ago and has made life quite unpleasant.

    I'm constantly itchy and my skin is quite sore too. My GP has run out of suggestions and so is referring me back to the immunologist. How I wish I'd carried on with those appointments as the referal last time took 6 months.

    I don't know anyone else with this particular problem and from searching the net I cannot find a forum with frequent urticaria sufferers where I can ask for ideas and support. So I hope no one minds me posting this here, I guess I'm hoping someone will stumble across it.

    From an itchy sparkly fairy! xxx

  • I too have chromic idiopathic urticaria- you are definitely not alone.

    In my experience only really high doses of steroids make much impact! I try to think of it as one of the nice side effects of steroids.

    Not sure what I can suggest! Do you have montelukast for your asthma as this is supposed to help slightly with urticaria? Also bizarrely so is ranitidine (but I think this is somewhat controversial).

    I know your urticaria is idiopathic but do certain things trigger it? like pressure of clothes, nickel in buttons/ buckles? If so maybe changing into cotton pyjamas when you get home (my niece used to do that when hers was bad). Also I find that my hait tickling my neck gives my a nice necklace of urticaria.

    Are you a subconcious scratcher? My mum is absolutely terrible so we try to make her wear gloves at night.

    Sadly I haven't found a miracle cure yet! Thoguh I have had it for 6 years or so and it bothers me less now. I wonder if you can get hynotherapy so you don't think you are itchy.

    If you want to moan feel free to PM me!

    Just typing this has made me feel itchy.

    Bryony

  • Just for interest - there is actually a small amount of evidence that both hypnotherapy and Cognitive Behavioural Therapy can be helpful in chronic itch. Itch is a very stressful and emotive symptom, which causes a lot of distress; stress can then make the itch worse. I believe hypnotherapy and CBT aim to try to reduce the emotional distress surrounding the sensation of being itchy and break this vicous circle. This is by no means intended to suggest that itch associated with urticaria or any other illness is all psychogenic or 'in your head'! Similar approachs have been employed with conditions like irritable bowel syndrome and chronic pain, where the interaction between the physical and the psychological is complex.

    Sparkly Fairy - I'm really sorry you're having a bad time with this. I'm afraid I don't really have any useful suggestions or theories, but I do hope things settle soon.

    Take care

    Em H

  • Bryony thank you for your post, have pm'd you :-)

    I don't take montelukast (singulair) but I do take zafirlukast (Accolate) , which works in the same way really, I never really know if it's having any impact on my skin but I take it for my asthma anyways. Will speak to GP about Ranitidine again, I did start it once but it was stopped during a hospital admission and I never went back on it.

    Tonight the itching is driving me mad and I'm supposed to be writing an essay for uni, bit impossible at the moment as I can't concentrate for very long!

    Off to put more diprobase on...

    Sparkly Fairy :-)

  • Hi there,

    Emily suffers with Idiopathic Urticaria too. It drives her insane !! She takes Ranitidine 150 mg BD, Desloratidine 5 mg AM and Cetirizine 10mg PM. She can also have Piriton if it's really bad. The Ranitidine does make some difference....worse without it. It flares up from nowhere on her arms,legs,neck and face.

    Unfortunately it is playing up at the moment......along with her gums ( she has overgrowth from her Ciclosporin ) which is also annoying her. All in all she is decidedly cranky at the moment and has had a few days off school.

    I really sympathise with all who suffer. I get eczema on the back of my neck and in between my fingers and that is bad enough.

    Bicarbonate of Soda in a warm bath helps the itch for awhile.

    Take care

    Cathy xxxxx

  • Have been told lavender oil will help but as i'm allergic to it haven't tried it. Same person (physio with an interest in alternative meds) also told me to take hemp oil/flaxseed oil 5-10ml spoonful a day to help skin, haven't tried this either due to allergies.

    Worth thinking about though

  • Evening primrose oil (Gamma linolenic acid) used to be prescribed as epogam for excema - I took it for PMT - but was taken out of the BNF as it wasn't proven to help excema. I found my skin was a little better though. You need to take it for 3 months to see any difference but check the interactions on the back (Contraindicated for Epilepsy) - I got mine from H&B after it was crossed off the lists but stopped taking it last year to see if I could manage without it. Skin a little more iritable but I haven't committed homocide with PMT! LOL. May be worth a try as a complementary thing ? Check with GP first though please - my GP prescribed it back in 1992.

    I take a bit every now & again, got a large tub to get through sometime!

    I cut it out to try to reduce the amount of fat in my diet ( slighly raised cholesterol)

    Kate

  • hi sparkly fairy - i replied to your first post on this as i broke out too at the same time and like you, am still suffering, it started round my neck and has just spread down body, arms, up to scalp now doing legs and feet. All GP will say is i must have changed something in the house but I havent (i've had eczema for 35 years so know to be really careful). She has given me Dermovate which is actually getting rid of the rash but not the itch, Eurax (from the chemist) takes a bit of the itch off plus Pirton and i'm back on sleeping tablets and just to pacify GP who is convinced persil may have altered, I am changing washing powder although am loathe to do that. Sorry I wish I could help more but maybe the Eurax is worth a go.

    jackie

  • Interestingly, I read an article some weeks ago in one of the major medical journals, which stated that (although oft-touted by patients and GPs alike) washing powder is actually a very infrequent cause of irritant/allergic rashes.

    Which is interesting. I will try and find it again, and post the link (or text if non-subscribers can't access it online) so that you can brandish it if you get a hard time!

  • Thanks Cathbear. The dr had student with her and she made me stand there in undies whilst student (who didnt look old enough to have left school!!!) and to guess what the rash was. he was really stressed and upset and i felt upset for him and i think gp was desperate to give rash a name so said its ezcema, i said it didnt present like this rash and she said it does now! and insisted i changed powder. have bought non bio ariel but may not change as Dermovate seems to be winning the day (touch wood or top of head""!!!!). would be interested to read that article.

    thanks

    jackie

  • Cathy,

    Is that just the non - bio ones or does that include the biological (Enzyme containing ones) ones which are better at cleaning really dirty clothes?? Though I challenge any wash stuff to get rid of the lanolin grease & sheep smell from clothes I used when helping sheering! (I use non- bio Ecover liquid as it is kinder to the environment too!)

    Kate

  • Hi Sparkly Fairy,

    Sorry you aren’t getting any relief from current meds and also just to add I truly sympathise with how you are feeling.

    I also suffer from urticaria fortunately usually short lasting – twenty-four hours - as well as severe atopic eczema. Sometimes get them both together. Have often watched those blistery …blisters arise with both a sense of awe and frustration especially if on public view. (Feel the same way with pred induced purply bruises)

    Both are caused in my case by allergans either inside or outside the home, workplace, socialising, doing sports and so on. Avoidance is complicated!

    I’ve had all the tests and surprise surprise have been described as one of the most ‘highly atopic’ patients ever met, with a top twenty worst allergies list that trigger not only grotty skin problems but also severe asthma symptoms, plus far milder rhinitis as an added bonus thank goodness! Still have a vivid memory of being in hospital with asthma and getting better, to be told “ we can’t let you go home looking like this until the dermatologist has been to see you”, ending up with yet another week of being in the place I’m most allergic to!

    Bottom line is that I don’t want or need medical academic bemusement just a safe practical solution like you and others have already clearly defined.

    By far the most effective drug for reducing the severity of urticaria have been oral steroids – which I take for asthma and not skin conditions.

    Interestingly although I always get the typical raised blistery patches no matter how high a dose of pred I’m taking – and have been on a pretty high dose of late – the itchiness disappears. I can only put it down to the sledgehammer effects of pred on that part of the immune system associated with the inflammatory process or type one hypersensitivity. A toffee sized hammer discovery med for both severe asthma and eczema would be much appreciated by you researchers out there!

    Unfortunately as we all know those Frankenstein steroid tablets should carry both a lifesaving as well as a driving you bonkers medal re side effects.

    However I’ve also found that aloe vera – squeezed directly from a cut leaf -very gel like -onto UNBROKEN skin, and as soon as possible after noticing symptoms does help relieve itchiness and, in my case, some of the severity of the inflammation, i.e. raised blisters don’t get any bigger. I stress that I only use this on unbroken skin. Daren’t risk anything other than ten year proven meds, both traditional and complementary on broken skin as the resultant drama re symptoms can take weeks to heal.

    As with any medicine or complementary therapies it would be sensible to discuss this treatment with a doctor, preferably a dermatologist or immunologist, before trying.

    I’ve seen aloe vera, used in all sorts of inflammatory skin conditions ranging from sunburn to eczema in other countries when working and traveling, and where there isn’t immediate access to traditional medication. ( Some years ago once witnessed an incredible lessening of sunburn in a tiny red haired four year old girl in Tanzania using ‘live’ aloe vera.)

    Good luck with all the other useful tips already described by Marmite, Kate and others.

    Mia

    XXX

    PS Oh and by the way I don’t believe that urticaria and other similar skin conditions aren’t linked to asthma. Inflammation is the vehicle which affects both internal and external organs ranging from the skin, to lungs to the bowel. The epithelium layer of our skin– both internal and external – is affected by allergans, and other stresses such as food intolerance.

    PPS I use Ecover products as well. Washing clothes liquid is the only one that doesn't irritate skin. MIRACLE!

  • Hi everyone,

    Well I'm still going around in circles with urticaria. Just under 3 weeks ago it flared so much my GP managed to get me an urgent appointment with one of the consultant immunologists in Leeds. I was put on Doxepin and it seemed to work wonders until this weekend when it has flared up again and I'm now back to square one having been placed on 30mg of pred by out of hours GP to relieve the facial swelling and swelling inside my elbows (I can't bend them properly because they are so swollen and sore). Hoping I can contact my consultant on Tuesday and see if he has any more suggestions.

    I feel so miserable and washed out with it all. I never imagined this was how I'd be spending my last month at uni, I'm supposed to be having fun!

    Sorry to moan.

    Sparkly Fairy

  • I thought of you last week, when I had my chest clinic appointment and my consultant was saying how useful ranitidine can be for treating urticaria! He said lots of people underestimate how good it is.

    Thankfully my urticaria isn't too bad, but I am covered in insect bites instead!

    Sorry that I don't have any useful suggestions. Let us know if you find a miracle cure.

    Bryony

  • Hi everyone,

    Just thought I would give you an update on where I'm at with this one at the moment...

    On the 8th of June I was admitted to hospital with a particularly bad flare up needing my epi pen. I saw a dermatologist who suggested salicylate sensitivity and I've been on a restricted diet since June 12th. All seemed to be going well and both asthma and urticaria seemed to have settled down until the end of last week. I began to get patches of urticaria on my neck which went away with piriton, then yesterday I started with another bad flare up and currently have rash on my face, arms, neck, back, tummy, feet and backs of my knees. I'm just at a complete loss with what to do any more and currently take cetirizine, piriton, ranitidine, doxepin and accolate to try and achieve some sense of normality. I wash with oilatum and apply diprobase as required and try to keep cool and out of the sun if possible.

    With this flare up I have marks around my waist as though my clothes are iritating me but the only trousers I have worn yesterday and today are two different pairs of linen trousers and some cotton pjs.

    It seems I am destined for a continuous battle with this monster!

    An itchy sparkly fairy :-(

  • Don't stress remember in a flare up of true idiopathic urticaria you can get pressure hives as the skin is so twitchy.

    Itching in sympathy but going down the menthol cooling route on the unbroken skin

    Marmite

  • Hey all am now settling down for my second night in hospital. saw gp yesterday afternoon and she wasnt happy with the state of my skin and the amount of swellingg. seem to be settling tonight after ivs and more pred., hope to be home tomorrow sometime. have the usual random characters urrounding me and bit fed up with it all, this is my 5th admission since march. ho hum xx

  • Hello Sparkly, sorry to hear you had to go in. Best wishes for a speedy recovery!

  • Salicylate Sensitivity

    Poor you. I know nothing about Chronic Idiopathic Urticaria but it must be awful. There’s nothing worse than an itch you know you mustn’t scratch! I was interested to hear that you have a sensitivity to salicylates. I too have a severe sensitivity to salicylates. I was admitted as an emergency many times with anaphylactic shock, angioedema (swelling of the mouth, neck tongue or joints) and violent stomach pains. Sometimes my feet swelled until they were like hard balls and it was almost impossible to walk on them and on one occasion my whole head swelled up. No one knew what was causing it. Pin prick allergy tests were negative and I was referred to a dietician. I suffered an elimination diet for 9 months – nearly every time a new food was introduced I had a reaction. Eventually after 2 yrs on the waiting list, I saw an immunologist. A wonderful man who identified the problem very quickly – salicylate sensitivity! For 8yrs I’ve been on a very restricted (and boring) diet but I am now very much in control and have few flare ups, I haven’t been admitted since although I always have my epipen close at hand. Three years ago the swellings started again whenever I took Paracetamol. I saw the immunologist’s registrar my notes were missing and she refused to believe that I could have had such re-actions to salicylates! She insisted it must be something else - though she admitted that people sensitive to aspirin often become sensitive to Paracetamol. Paracetamol is now also on my no no list.

    The reason I’m telling you all this is because you are the first person I’ve come across with this sensitivity. Salicylates are in so many foods, do you think this may be aggravating your CIU?

    I’m not for one minute suggesting that you try an elimination diet without medical supervision but it may be worth asking your immunologist’s opinion.

    Take care - I hope you are soon well

    Liz

  • hi liz you too are the first person i have spoken to with salicylate sensitivity. i too have had many emergency admissions for anaphylaxis and angiodema and on my last admission in june a dermatologist made the suggestion of salicylate sensitivity. i was started on an elimination diet which was successful from both asthma and urticaria point of view until this week. i have now seen a dietician who has been very helpful and supportive and wants to see me regularly to review things. it is a very restrictive diet and hard work! will pm you when out of here!

    well as you might be able to see from the dodgy typing with no caps im still in hosp and struggling to type with tiny keyboard and canula in awkward place. was meant to go home today but had another reaction caused by catering team not following instructions properly. needed more ivs and oxygen, joy. really want to escape tomorrow but face resembls a chipmunk or hamster at the mo, not like my usual appearance at all. best go, nurses just put light out. x

  • Hi Sparkly

    Sorry to hear you are still in. Hospital is the worst place for getting anything to eat. After an operation all they could come up with was toast eggs and breakfast cereal. Low Sal. seemed to be completely beyond their comprehension. Perhaps you can get a relative or friend to bring food in for you.

    Hope you recover soon

    Liz

  • Am free! Not an experience I want to repeat again in a hurry. Shattered and have a pile of washing to deal with... thanks for the kind messages whilst I was in, would have gone a bit mad if hadn't had patient line me thinks. x

  • Have bounced back in again, was rushed back in again with a bad flare up and lots of facial swelling, two lots of adrenalin and usual ivs and am residing on short stay ward in local costa. Hope to escape tomorrow, dr has promised I can go tom if better. ho hum

  • Hello Sparkly

    You're really having a rough time. Hope you improve and manage to escape this weekend

    Liz

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