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THERE HAS TO BE A CAUSE OF URTICARIA ...

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gracIe53
gracIe53

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.

15 likes, 259 replies

259 Replies

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  • debolite
    debolite gracIe53

    Posted

    EVERYONE READ....THIS WORKS!!!! Hello all, I am new to the site as far as contributing but have been reading posts for a few months now. I have had hives for almost 6 months now and as all of you know, it is worse than horrible. I have been to my GP, Dermatologist, Urgent care twice and 1 trip to ER in search of answers or at least some relief. I have been unable to sleep during this entire thing except for an hour or 2 here and there. Until last night. A few days ago I read a post from "hives and thyroid" about her cocktail which she swears works. Yesterday I go to the Allergist still looking for answers and my main concern I will be off my 5th round of steroids since January, and I know it will come back very strong. After talking a while she changed my antihistamine to Doxepin. Hmmm, that sounds familiar...I went home and read the post again and yes, it is one of the drugs that worked for her. Singular I am already on. Thats 2 of the 3!!! The other is Zantac..over the counter. I picked up a box and went home and made my cocktail....Singulair 10 mg. Doxepin 25mg. and Zantac 150 mg. I KID YOU NOT GUYS...MY ITCHING STOPPED WITHIN AN HOUR. TODAY ALMOST 24 HOURS LATER, STILL NO ITCH!!!! The hives are slowly fading as well but they dont itch!! It seems that the combination of these drugs hits all the H1/H2 receptor sites to stop the histamine from being released into the body. The Zantac hits the receptor site H2 which it seems the other antihistamines do not. Zantac, who knew??? I feel like a new person. What a relief. Talk to your doctors and get these 3 meds!!!!! I will keep you posted on my progress...Now to find the cause of it.btw...Zantac (ranitidine) was first developed to be a histamine antagonist, hence it's use, along with other antihistamines, for hives. Good luck everyone, I know you are all as desperate as I am
  • MyGingercat
    MyGingercat gracIe53

    Posted

    Gracie, I bet you dollars to donuts that you and many other as well I have autoimmune problems. Our bodies are attacking themselves and putting up a good fight. They are fight stuff that gets into our blood streams via a "leaky gut" or increased intestinal permeability. This happens due to what we put into our mouths - gluten, dairly, sugar, alcohol, nuts, seeds. medications (especially NSAIDs). Look o9n the internet for "leaky gut syndrome". This can be changed. I am on the third week of changing my eating habits and today have almost no "blossoms" - no itching. In 6 months I can start to test a few of my favorite foods again, but I have to give time for my gut to heal. Doctors don't want to know about this and pharmacy companys hate the idea - no $ to be made. Food is your medicine. If you want to try to do it the easy way, take their medicines. If you will join me in the hard way, you can find releif on a permanent basis.  I am alone in this and "crazy" - it is science that is not well known yet.  You'll hear more about it in another year or so, but don't wait - try it!
  • MyGingercat
    MyGingercat gracIe53

    Posted

    There IS a cause. Look to the inside of you not the outside.  It is probably one or all of the following - gluten (all grainsa), dairy, especially eggs, sugar including fructose, lactose, etc., nut, seeds, nightshade veggies (potatoes, peppers of all kinds, eggplant,etc), alcohol, coffee (which is made from a seed), and probably other things.Do research on line - look for automimmune disease, autoimmune protocol/paleo diet, author Sarah Ballantyne and others. Doctors and pahrmacy companies won't tell you becasue they can't make money off ya! It is the HARD way, but the only way. I am getting results, slowly. NO DRUGS! (which make it worse in the long run). RESEARCH - DO THE WORK!
  • lorraine34338
    lorraine34338 gracIe53

    Posted

    My sympathies, the two times I have had CIU (I still have it) came about after I had been ill.  Your immune system is working overtime exacerbated by stress from the itching and anxiety about when its going to stop if ever. I was prescribed ciclosporin which is an immune suppressant and doxepin for my depression (it has antihistamine in it as well) plus fexofenedine anti histamine and loretadine. I am now free of itching, rashes and wheals but I have to be careful not to irritate my skin or get too stressed.  Also make sure your gut is working property, I also consulted with a nutrionalist and received help and advice.  I think it was a combination of all the above that has relieved my CIU.  My specialist does not like the word 'idiopathic' or 'ordinary' urticaria, she calls it 'spontaneous' because that's what it is, it comes out of nowhere.  Look for a dematologist who specialises in urticaria.
  • madeinholt
    madeinholt gracIe53

    Posted

    Does anyone suffering with CSU know if they have had their Cortisol levels tested?
  • StudentMidwife
    StudentMidwife gracIe53

    Posted

    Mine were caused by a vitamin d deficiency. It really was as simple as getting my vitamin d levels in the normal range to stop them. Pretty hard to believe that something so simple could pretty much wreck my life. Definitely get your vitamin d and b12 levels checked if you haven't already.
    • lorraine34338
      lorraine34338 StudentMidwife

      Posted

      Hi

      My urticaria is linked to my immune system so its no surprise to me that Vit D and B12 helped.  I take both those as supplements to my diet now.

      Lorraine

    • desmond01416
      desmond01416 StudentMidwife

      Posted

      Same here. One thing to be aware of is that Vitamin D cannot be absorbed well if a person is Magnesium deficient. Excessive exercise, alcohol, caffeine and lack of Magnesium in our diet and water supplies all contribute to Magnesium deficiency and afterward vitamin D deficiency. Even the medical establishment is recognising that people living outside of sunny climates need to take Vitamin D. But I don't think many doctors  appreciate how widespread deficiency of magnesium is and how it contributes to Vitamin D deficiency.

  • heather94146
    heather94146 gracIe53

    Posted

    Do you still have hives? If not, was there something specific that helped?
  • julian18620
    julian18620 gracIe53

    Posted

    I feel like I'm now a member of an exclusive club I never wanted to join.

    I'm a 48 year old man and I have never had any real health issues except pneumonia a decade ago.

    In late July this year I  returned from a month in 40 degree weater with my family. I returned on a Tuesday. Had a really nasty tooth extraction on the Friday and within that week had the first appearance of widespread urticaria and angio-oedema.

    I know this is not a contest, but I can (JUST) cope with the urticaria (I use cider vinegar to relieve the itching)... like everyone I am on fenofexadine too... BUT the angio-oedema is just horrific and terrifying. It also lasts longer than the urticaria... or at least it lasts longer in the sence the urticaria moves somewhere else every other day. But yeah I've had my lips and eyes swell like you would not belive about eight times in last two months and this week had a new one where just the eyes swelled (from a different swelling to before) and my throat went at the same time.

    My GP has been awesome and is as puzzeled and as honest and genuine about it as anyone could be. He is also open to suggestions and today I have written him another letter with my own suggestions of what we could test next.

    My blood work is all clear and in general I feel healthy apart from this which like all of you on here will know is slowly but surely sapping my will to live and do anything... I am startying to cry now. I hide much of it from my family as I have kids from 2 years to 16 years and elderly parents to look after. Only my wife knows just how much this is doing my head in. 

    It's now been 16 weeks of hell and when I read of people having it for years I can't imagine how anyone can cope... I guess you just do.

    I have had some break throughs. I have had a couple of attempts at using steroids and found after three days it cleared and I also stopped eating any chocolate and had a week of nothing, no urticaria no angio-oedema, then one morning while sitting with my two year old I felt the familiar tingle in my lips and within a couple of hours my head and face had gone up like a balloon. I took fexafenadine and some steroids and it went back down within 12 hours and then the urticaria came back all over me and with a vengence and way more itchy than it had been before.

    I am down to see a leading immunolgist who does seem to have a great reputation he is a bit like getting an audience with the pope... but even going private the appointment is over a month away. I wouldn't say I have high hopes, but you never know.

    I am an osteopath myself and at least have the advantage of working from home and have only put off one patient so far due to feeling I was too unslightly to treat. Like amny on here I now dread going out, right now my eyes are so swollen I look like I have been fighting. I am taking my teenager to a gig in London on Saturday and hoping it will coincide with a moment of tolerable remission or I can take enough drugs to make it that way.

    The durg taking is another issue, like most people I am concerned that the drugs aren't now part of the problem rather than the solution. I studied some pharmacology and drugs can effect everyone very diffeently. I have put more faith in acupunture and am now seeing a lady I saw when I had pneumonia twice a week, it feels like it helps. She has suggested a diet which in traditional chinese terms is low in heat, the problem is those foods are so the oposite of my prefered diet I almost feel like it's not worth the effort. I wonder how many more on here are lovers of spices etc and if there is anything in that idea. The first thing she said was cut out all cayenne and chile etc and I add cayenne pepper to literally everything I eat. I am not convinced paleo diet is the way to go either. But you get so desperate. The steroids work for me... and if you could take them everyday and no they had no adverse effects I would... but they do and I won't. It always amazes me when i get pateints who have taken a high does everyday for many years.

    Anyway I agree there needs to be more reseach.

    And about the only thing which helps me is knowing I am not alone and there are loads of people out there coping with this. It's so hard when friends say 'you want to get that looked at' or similar or are sure it's your cat etc... you try and explain it seems to have no known origin or cure and can last years... it gets old fast.

    • heather94146
      heather94146 julian18620

      Posted

      Are you taking ibuprofen or anything with a spring in it? If so...stop! Members of this club (lol) can't take anything like that.

      I am with you in the fact that I don't believe there is no cure. However, you came to the right place. After some changes 5lthat you will learn about, your should hopefully feel like yourself, pretty much, again.

      I stopped eating gluten. I may sound like a broken record to some people but I didn't believe the whole gluten free thing. But it worked. I do still take very little antihistamines but other than that I am back to normal as long as I watch what I eat and drink.

    • heather94146
      heather94146 julian18620

      Posted

      ....I still eat spicy foods or I add it to my bland rice. I don't know if I'm doing the right thing or not but I keep it natural atleast, and it doesn't bother me. Maybe when healing the gut you should avoid it but I also feel it's my reward for having to live with this.
    • julian18620
      julian18620 heather94146

      Posted

      Heather, I forgot to say I had noticed ibuprofen has given me a very violent reaction, as recently as this week. 

      Thank you so mush for taking the time to reply though. It meand a lot.

      I try to stop gluten, but I find that so hard to stop entirely. 

    • julian18620
      julian18620 heather94146

      Posted

      Heather what is a 'spring' in the context of ibuprofen... obviously i have now given up taking them.

      And can you siggest any painkillers for future use which don't make this worse?

    • heather94146
      heather94146 julian18620

      Posted

      That was supposed to say asprin..lol. I have a few headaches that I just couldn't get rid of when I was weaning down to one cup if coffee so I just take Tylenol extra strength
    • lorraine34338
      lorraine34338 julian18620

      Posted

      Hi Julian

      All NSAIDs (antiinflammatories) are a no no for hivey people. Paracetamol is ok, nothing with codeine as well. Diet is different for everyone but no spices is a must but garlic and ginger are okay. Basically keep wheat products at a minimum, eat very fresh meats, veg and fruit, no milk use alternatives such as rice or oak milk, no soya. It's a healthy diet and yes I'm afraid no processed foods inc Choctaw. Also steroids work but don't get rid long term sometimes. Are you from UK?

    • lorraine34338
      lorraine34338

      Posted

      Not Choctaw- I meant chocolates- predictive text!!
    • hanneke54158
      hanneke54158 julian18620

      Posted

      Hi Julian

      I'm so sorry that you've joined 'the club'!

      I've been suffering every day now for 16 months. They appeared out of nowhere and I have no idea why or what causes them. Since they started I now react to anti histamines so cannot take those to ease condition. A few visits to the dermatologist has got me any further forward or offered any alternative medicines to the anti histamines. Because my reaction to them is so severe I have avoided taking any sort of tablet! However with the consultants advice, I did try liquid anti histamines but sadly I had the same reaction. The only thing that gave me a brief break - actually four weeks clear! - was the kenalog injection for hayfever but sadly the GPS don't like giving these out.

      Like you I want to hide away. Summer holidays fill me with dread now as skin exposed ... No thank you! I'm constantly checking to see what's appearing now! Just had a terrible week in the south of France, weather was fantastic, hives were dreadful - arms neck and chest covered every morning! Doesn't make you feel like leaving the room wearing a short sleeved top now!

      It's hard on your loved ones because you start to feel unattractive, weird ... Close yourself off from them.

      Most people say I'm worrying too much about them, you can't really notice them - really!?

      Like you the forums scare me when you read of people having the condition for years and years! I've had four trips to the hospital now and haven't had a single test done ... They just don't seem to be interested in investigating what could be the cause!

      It's hard I know but try not to let it get you down ...

    • lorraine34338
      lorraine34338

      Posted

      Keep clear of aspirin it's an NSAID
    • heather94146
      heather94146 julian18620

      Posted

      I eat rice, corn grits and I bought a loaf of gluten free bread that I keep in the freezer and I take out if I want bread. I don't miss it. Well that's not true because I like beer but there are gluten free beers and the ciders are gf too. I enjoy pretzels so I tried a few brands and found 2 I really like. I eat salads instead of sandwiches or I just skip the bread or bun. I try to stick with mainly whole & fresh foods & fresh fruit, other than my snacks (I just make sure they are gf). Another favorite of mine is hot water with lemon juice and sometime I add honey.

      I say this to everyone. When I was in my worst place and crying and in pain from eating, I swore if someone could help me, I would do anything to feel like a human again.

      One of the ladies just posted her regimen. I have not done all she has but I am willing to try some of them. I can't do just Palo and so far I have not had to.

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      Try to get a PEG urine test for 'Leaky Gut Syndrome'. I did had it and took various supplements to heal it along with meds I've gone into remission. GPs in UK don't believe in Leaky Gut so you'd have to go ribs the but it's worth it.
    • StudentMidwife
      StudentMidwife julian18620

      Posted

      I'm so sorry you are suffering. I had constant angiodema and urticaria around my eyes and occasionally my lips and neck as well for 8 months before finding out I was severely deficient in vitamin d. The prescription strength vitamin d put mine into remission but I have discovered taking a daily low dose aspirin for a blood clotting disorder made them reappear so I've had to stop that. I can take ibuprofen occasionally without them reappearing. Im considering going gluten free myself as I have hypothyroidism and feel very unwell a lot, and that is supposed to help. Maybe after Christmas. Fexofenadinemade my appetite increase and gained lots of weight while taking it. Thankfully I lost it all quickly after stopping. I didn't find antihistamines very effective anyway. Steroid creams worked for a bit then stopped. I hope you find whatever has triggered yours soon and you get some relief. It is a very hard thing to bear.
    • julian18620
      julian18620 heather94146

      Posted

      thank you... Tylenol is Paracetamol here... smile my wife always has some around so will use that if I need anything for headache etc
    • julian18620
      julian18620 lorraine34338

      Posted

      Hi Lorraine, yes I live in the UK just outside London. Thank you so much for the reply.

      I eat a reasonable diet now. Just one which seems at odds... my ideal meal is a massive stir fry with lots of veg and prawns and shed load of chile. It has been worse on days when I have that. I'm also considerably overweight and need to lose a lot. So right not food has become more of a chore than a please... which makes things worse in so many ways because I don't even look forward to eating. It's 9.00pm here and I haven't eaten anything today.

    • julian18620
      julian18620 hanneke54158

      Posted

      Thank you for the reply and sorry to hear your experience. Good luck and I hope things get better for you smile
    • julian18620
      julian18620 StudentMidwife

      Posted

      The swelling is terrible isn't it... my eyes have been bad for two solid days now which is getting towrads the longest they have been.

      Before cutting gluten you might want to consider sticking to spelt or organic wheat... not all wheat is created equal... and spelt is an original form of wheat which is genetically unmodified and has been consumed by humans for at very least 7,000 years and the ancient wheats and organic wheat are far far less likely to cause any issue than wheat as found is commercial bread and pizza etc.

      Fexofenadine I am lucky, maybe my history, but I never really have issues with drugs I find they either work or don't. I can take two at a time and feel no different. I am concerned about the toxin levels in my kidney and liver.

    • lorraine34338
      lorraine34338 julian18620

      Posted

      If you don't feel confident with your new immunologist ask your Gp to refer you to Dr Sabroe Dermatologist at Sheffield Hallamshire Hospital she's one of the top specialists in the UK and very knowledgeable and caring. If you stick to a low histamine diet you can get lists on 'the net' plus try to be tested for leaky gut. If you can't get some L-Glutamate powder, some good probiotic tabs,some good multi vits. My nutritionalist put me on these alongside the diet and I'm almost fully clear. If you've been over eating and drinking you've messed up you're system. It does work alongside good medication. I lost 8lbs on it and I didn't starve myself. Use garlic, ginger and sea salt to season food. Good luck
    • lorraine34338
      lorraine34338 julian18620

      Posted

      Yeh I forgot about spelt - I did use this instead of normal bread and it was great - for others who bake you can get spelt flour for buns cakes etc.
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