THERE HAS TO BE A CAUSE OF URTICARIA ...

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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

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  • Posted

    Hi. I have suffered from chronic urticaria for 15 years. I recently went to visit an Allergist and Rheumatologist that confirmed it is autoimmune related. She put me on the same medicines as my mother who has rheumatoid arthritis - methotrexate!. Eventually I will start plaquenil which is an antI maleria drug. By the way I have no allergies, no medical issues other than hives that come and stay for many many months. I was only able to keep the hives down with prednisone and that has really hurt me more. I wish you luck but trust me....find and Allergist and Rheumatologist that can test you in a complete manner. I suffered for so long with a great Allergist but this was beyond her expertise. I wish you the best!
  • Posted

    Thank you so much for sharing your experiences, my husband of 84 years is going through the same thing and no help in sight.  He even had staff infection in the arms .He also coughs a lot so maybe thats where his monster lives too. and of course the GPs of  two different countries could nt find a thing nor the dermatologists.  I am also very thankful for this web site, nice to know we are not alone .God Bless.
  • Posted

    I am now retired but used to be a specialist in blood disorders, patients would complain of urticaria or of an intolerable urge to move their legs, which would lead to sleepless nights and exhaustion, didn't sound life threatening and I am ashamed to say that I too adopted the, "it will pass approach." Just over a year ago a cardiac drug damaged peripheral nerves,leaving me with numb fingers and toes, this recovered over months.

    then I began to itch all over but particularly on my back, all sorts of creams tried but did not work. Sunbathing helped when available. Then the restless legs got so bad that sleep was restricted to early morning. I looked up causes of the problem and found an excellent patient plus article - iron deficiency was on the list. I have such complex genetic problems that proving iron deficieny was not easy, some tests such as ferritin purported to show that I have good stores. Oral iron was not well tolerated but a 15 minute drilled to massive improvements. I see that some of you have helicobacter, which causes iron deficiency. Some of you will have had tests for coeliac. Make sure that IgA antibodies were checked. IgA deficiency is common and invalidates the coeliac test.

    sadly one problem is mended and another comes along. I had shingles, taking treatment < 4 hours later but still have really irritatingfacial pain, naturally worse at night.

    in due course i can look forward to pruritis secondary to renal impairment and possibly also by liver damage caused by right heart failure.

    two wonderful grandchildren mandate every effort to find cures or aids.

      4="" hours="" later="" but="" still="" have="" really="" irritatingfacial="" pain,="" naturally="" worse="" at="" night.="" in="" due="" course="" i="" can="" look="" forward="" to="" pruritis="" secondary="" to="" renal="" impairment="" and="" possibly="" also="" by="" liver="" damage="" caused="" by="" right="" heart="" failure.="" two="" wonderful="" grandchildren="" mandate="" every="" effort="" to="" find="" cures="" or="" aids.="">

    in due course i can look forward to pruritis secondary to renal impairment and possibly also by liver damage caused by right heart failure.

    two wonderful grandchildren mandate every effort to find cures or aids.

     >

  • Posted

    Google xolair

    It works, just heard about this and I am going to receive treatment soon. Look more information up this is relatively new. Also known as omalizumab. Hope this helps everybody, pretty sure an Asthma/allergy doctor can help out with this

  • Posted

    Hi

    From U.S. I've had same problem steroids work for short period and wanted to scream. F****** doctors lol truth is they don't know anything I switched my detergent to allergy free waited hives went away (they say body changes every seven years) aby way keep living my symptoms went away but I'm now suffering from allergic excema

    Keep the faith this too shall pass

    Kurt

  • Posted

    Has the chance of it being a fungus been looked into? A fungus infection can cause rash and itching just like an allergy can. They also respond to steroids, but not so.much to antihistamines.
  • Posted

    Has the chance of it being a fungus been looked into? A fungus infection can cause rash and itching just like an allergy can. They also respond to steroids, but not so.much to antihistamines.
  • Posted

    If Western medicine has no answers,look into Eastern,Traditional ChineseMedicine.

    The TCM names of urticaria include, wind rash (feng zhen), wind itch concealed rash (feng sao yin zhen), and wind rash lumps (feng zhen kuai)

    Signs and Symptoms

    Pale or red wheals appear suddenly on the skin and are caused by vascular dilatation and edema, with an itching or burning sensation. The lesions may remain small (1-5mm) or enlarge to as much as 10cm or more across. Crops of skin lesions come and go, with a lesion remaining in one site for several hours, and then disappearing within 24 hours.

    Acute urticaria is self-limiting and typically subsides in several days to 2 weeks. Chronic urticaria recurrently attacks for more than 6 weeks.

    Traditional Chinese Medicine Etiology

    Wind is the main pathogen in urticaria.

    • Wind-cold or wind-heat invades the body, which results in a disharmony between nutritive and defensive qi

    • Damp-heat accumulates in the stomach and intestines, due to an irregular diet or intestinal parasites.

    • A congenital defect with qi and blood deficiency results in wind and defensive qi deficiency.

    • Mental irritation, disharmony of the Chong and Ren, or liver and kidney deficiency can not nourish skin, generating wind and dryness.

    Differentiation and Treatment

    1. Wind-cold

    White colored wheals appear and they are aggravated by cold and wind and alleviated by warmth, and occur most frequently in the winter. There is no thirst and the tongue is pale with a thin white coating, and the pulse is floating.

    Treatment principle: Disperse wind and cold, harmonize nutritive Qi and defensive Qi

    2. Wind-heat

    Red colored wheals appear and are aggravated by heat and alleviated by cold. The temperature of the lesions is higher than that of the normal skin, and the lesions occur most frequently in the summer. There is also restlessness and thirst. The tongue is red with a thin yellow coating, and the pulse is floating and rapid.

    Treatment principle: Disperse wind, clear heat, and stop itching

    3. Damp-heat in stomach and intestine

    Red colored wheals appear with an irregular diet, accompanied with abdominal pain, nausea, vomiting, and dry or loose stools. The tongue is red with a yellow and greasy coating and the pulse is slippery or rapid. Some cases have intestinal parasites

    Treatment principle: Clear intestines and transform dampness, disperse wind and stop itching

  • Posted

    I was diagnosed with Dermagraphism Urticaria 17 years ago. You may be aware it's an auto-immune disease. I found Citirizine the only affective anti-histamine. In 2010, I was diagnosed with Crohns disease, another auto immune disease. I'm also Asthmatic and suffer from Rhinitis (dust allergy), Sinisitis and Hayfever...all auto-immune diseases. You see the pattern?? I am now being treated for Anxiety, not surprising really.

    My own research into all this has reached as far as MAST CELLS being the culprit. WHAT ARE MAST CELLS?

    Mast cells are "master regulators" of the immune system. They come from bone marrow and go into all tissues of the body. Each mast cell contains secretory granules (storage sacs), each containing powerful biologically active molecules called mediators. These can be secreted when mast cells are triggered, leading to allergic and inflammatory diseases/conditions.

    And this is just the beginning!! Their is a lot on the web regarding Mast Cells so take a look. 

    I still can't find a cure, but knowing how these things start and that they're all linked plays a crucial part in how I care for myself to stop Mast Cells from reproducing. I'm only 40years old, I really don't want another Auto Immune Disease!! Good luck to all with these conditions.

    • Posted

      Chrohns disease is very connected to an immune response to a yeast called Saccaromyces Cerevaise (yeast Cerevaise). This is due to an imbalance of good gut

      This scientific paper  may help but there is massive amounts of information on the internet for this. All auto-immune conditions can be helped - they come as a result of hyperintestinal permeability aka "leaky gut syndrome".  Cutting out gluten, sugars and carbs can be very helpful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1379444/

  • Posted

    After 8 months of hives and angioedema and being fired from my job I found out That my blood pressure medicine Lisinopril hydrochloroziade was causing it. I stopped it on march 17 and I have been hive free ever since!!!! I am still having weird bruising and fatigue and I am angry that I lost 8 months of sleep and my job from it. I am angry at the pharmaceutical industry and the multitude of doctors that were ignorant about this blood pressure drug side effect
  • Posted

    I am 72 years old and first had urticaria almost 20 years ago. The doctor explained to me that it was understood how it developed and behaved, in that the rash could be widespread and severe, that it would burn itself out, but not completely, and then flare up again, but it was not understood what caused it in the first place

    I was prescribed antihistamines which I took for about four years. They made the rash less severe but that was all -.they never made the it go away and after taking them for so long they upset my sleep patterns and I was like a zombie.

    At one stage I was completely covered with the rash and prescribed steroids, which were no real answer to the problem. I have also experienced the severe swelling of the face which you mention. The worst example of this was on a

    When I was a child I used to get what my mum called "heat lumps" and I was given a vile cocoction of sulphur powder in milk , which got rid of them. In 1999 I remembered this and decided to try sulphur tablets which were freely available at that time. They got rid of the rash COMPLETELY in a matter of days and I have had no trouble with urticaria until March of this year.

    Sulphur tablets are no longer freely available because of health concerns. One concern seem to be that they are not regulated. I have surfed the net to try to ascertain what the medical risks are posed by taking these tablets are, but without success. As you work in a hospital maybe someone there could explain it to you

    However I have managed to get a homeopathic remedy called Urta and I have had some success.

    This time the rash started on my lower legs, firstly on the right leg (quite severe) then the left (not as bad). The remedy has had little effect on the rash which was established, but it has since tried to spread to my arms and the spots there have gone down without becoming red and itchy. The rash on my left leg has subsided considerably and has almost gone and my right  leg is much better.

    If you try this, I think you will probably need to take it for 4 to 6 weeks before you see any real improvement. 

    I hope I have been of some help because I know how awful it is, especially when it erupts on your face.    

  • Posted

    One of the major reasons for urticaria is gluten sensitivity. Non-Coeliac Gluten Sensitivity is a chronic disorder just as important and more far reaching and devastating than Coeliac. You can be tested for Coeliac and still come back negative yet all the time and all your life you could have been highly sensitive to gluten. Gluten sensitivity does not just have to manifest in the digestive system - you can be unaware of its damaging ways! If you are gluten sensitive the immune system will react by sending out antibodies at the slightest hint of gluten - these antibodies in trying to attack the gluten, will attack healthy tissue, including skin. Gluten is a protein and has a make up very similar to human tissue.  Worth cutting very strictly all gluten out of your diet (check everything). Bear in mind also that most grains contain a type of gluten in one form or another so the standard, wheat, barley, rye is often not enough to see a vast improvement. There can be cross-reactivity (where the immune system sees say for example rice as gluten) and the immune system will act in the same way, trying to fire it away. Non-Coeliac Gluten Sensitivity is very well documented now in all manner of scientific research - it is well recognised in the USA. It does not show up on standard Coeliac testing.
  • Posted

    You poor love. It doesn't help but I feel so sorry for you. I run a pub and have good staff so rarely go behind the bar because of the condition and feeling washed out so having your stressful job must be terrible.

    I am now looking at hypnosis because I am pretty sure that stress is the trigger. Had one session and am looking at a weekend away to try and break the stress cycle. Only had one week off in 5 years and I know that helped, especially the sea.

  • 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.

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